KAGGEVINNE - Hoofdpijn, moeilijke stoelgang, verkrampte spieren en vermoeidheid : we hebben er allemaal wel eens last van. Voor fibromyalgiepatiënten zijn zulke kwaaltjes echter dagelijkse kost. Christel Vervoort (33) uit Kaggevinne is een van hen. Zij vecht tegen onbegrip : ,,Fibromyalgie is géén ziekte van luiaards.''
“De problemen zijn begonnen in mijn tienerjaren'', zegt Christel Vervoort : ,,Ik had vaak last van spierpijn. Ontstoken pezen en gewrichten. Mijn huisarts had er niet meteen een verklaring voor. De pijn werd mettertijd erger. Dat heb je met een kantoorjob , klonk het toen. Tot een reumatoloog mij vertelde dat ik aan fibromyalgie leed. Intussen heb ik m'n job moeten vaarwel zeggen. Het werd onleefbaar.''
Spierpijn, slaapstoornissen, migraine, slokdarmproblemen, schimmelinfecties, diarree én constipatie, constante pijn in nek en schouders: het lijstje met symptomen van fibromyalgie is niet min. Voor Christel en tal van lotgenoten komt daar chronische vermoeidheid bovenop.
Mensen brengen niet altijd begrip op voor zulke aandoeningen : ,,De ene dag lijkt de pijn wat minder, de andere ben ik een wrak. Dan word je al gauw voor luiaard versleten. Da's weer zo'n vrouw die van de ziekenkas profiteert , hoor je sommigen denken. Geloof me vrij : mocht ik weer aan de slag kunnen, ik twijfelde geen minuut.''
Ook de medische wereld weet geen raad met fibromyalgie. Volgens de ene arts ligt de oorzaak bij een virus in de hersenen, anderen zoeken het dan weer in de ruggenwervels. Christel herinnert zich een uitspraak van haar vroegere huisarts : ,,Fibromyalgie is een ziekte voor luie mensen.''
Geregeld zoekt Christel het gezelschap op van lotgenoten : ,,Ik hoor er hoe andere patiënten met pijn en vermoeidheid omgaan. Je leven verandert er immers radicaal door. Je moet je grenzen leren kennen. Een half dagje naar de markt ? Daar draag ik minstens een week de gevolgen van.''
Een afdoend bestrijdingsmiddel is nog steeds niet gevonden. Het blijft behelpen met lapmiddeltjes en antidepressiva. Maar Christel geeft de moed niet op : ,,Ik ben niet van plan om mijn hele leven tussen vier muren te blijven zitten. Hopelijk komt er gauw schot in het onderzoek zodat ik het leven van een normale dertiger kan leiden.''
Meer info ? Vlaamse Liga voor Fibromyalgie Patienten (V.L.F.P.) : http://www.vlfp.be/ -.
Voor zowel de individuele werknemer als de samenleving is het van groot belang dat de beoordeling van arbeidsongeschiktheid in overeenstemming is met de stand van de wetenschap.
Daarom brengt de Gezondheidsraad ter ondersteuning van de verzekeringsgeneeskundige beoordeling, op verzoek van de minister van SZW, een tiental verzekeringsgeneeskundige protocollen uit.
Ze worden opgesteld door een commissie van de raad, in aansluiting op bestaande evidence based curatieve en bedrijfsgeneeskundige richtlijnen.
Het advies Verzekeringsgeneeskundige protocollen : Chronische-vermoeidheidssyndroom, Lumbosacraal radiculair syndroom, dat vandaag verschijnt, bevat het achtste en negende protocol in de reeks.
In de christelijke traditie is Pasen het belangrijkste liturgische feest. Met Pasen, of het paasfeest, herdenken Christenen het lijden en de kruisdood van Jezus Christus en vieren zij zijn opstanding, ook wel 'verrijzenis' genoemd, uit de dood.
Met de christelijke viering wordt evenals met de joodse viering,de uittocht herdacht, zij het metaforisch vanuit het werk van God in en door de persoon Jezus Christus, voor christenen de Zoon van God, de beloofde Messias, de Verlosser. Hij wordt in het Nieuwe Testament het paaslam genoemd, dat zichzelf vrijwillig liet offeren voor de verzoening van God met de mensen. Dit duidt op de symbolische betekenis van het offerlam, dat volgens de Mozaïsche voorschriften (Oude Testament, Pentateuch) en de tradities van de joodse godsdienst geofferd moest worden ter vergeving van zonden. Met de voorstelling van Jezus als het eeuwige paaslam werd in geestelijke zin een 'nieuw verbond' tussen God en mens aangeboden, gebaseerd op de genade, waarmee het oude verbond, gebaseerd op de wet, buiten werking kon worden gesteld. Wie in Hem gelooft, hoeft volgens de christelijke traditie niet meer 'onder de wet' te leven, maar valt 'onder de genade'. Deze begrippen en de verhoudingen tussen het een en ander zijn in onder meer de brieven van de apostel Paulus nader uitgewerkt.
Kerkelijke oorsprong
Nadat de Joden circa 400 jaar als slaven in Egypte hadden geleefd, werden ze door God bevrijd. Hiervoor zette Hij onder meer allerlei plagen in. Met Pesach herdenkt het Joodse volk zijn uittocht uit Egypte onder aanvoering van Mozes. Ter ere hiervan werden vroeger lammetjes geslacht en speciale broden gegeten. Jezus is op deze herdenkingsdag (vrijdags) gekruisigd. Op zondag wilde men hem balsemen, maar het graf bleek leeg te zijn : Hij was uit de dood opgestaan. Met Pasen herdenken Christenen deze wederopstanding van Jezus.
Heidense oorsprong
Pasen zou zijn ontstaan uit een feest ter ere van de godin van de sensuele liefde of vruchtbaarheid : Astoreth/Astarte/Isjtar. Met grote orgieën werd gevierd dat de zon terugkwam en de natuur ontwaakte uit de winterse dood. Vroeger vond dit feest plaats rond 1 mei. De symbolen van deze godin waren de haas en het ei.
Een andere verklaring is dat Pasen afstamt van een feestdag ter ere van de godin van de dageraad : Eostre of van een lentefeest ter ere van de Teutoonse godin van licht en lente : Eastre. Het feest was bedoeld om de demonen van de winter te verjagen. Vaak werden hierbij paasvuren aangestoken op heuveltoppen. Veel van de symbolen rond het moderne Paasfeest zijn in deze heidense feesten terug te vinden.
Zoals bij zoveel van onze feestdagen is ook hier een heidens gebruik dat moeilijk uit te bannen was door de kerk (wijselijk) verbonden aan de Christelijke viering ervan. De overeenkomsten zijn ook eenvoudig te zien : het herrijzen van de zon vs. het herrijzen van Jezus.
Jezus' tijd
Ten tijde van Jezus was het Pascha, naast het pinksterfeest en het Loofhuttenfeest een van de drie belangrijke pelgrimsfeesten.
Het was nauw verbonden met het Massotfeest; beide werden in feite als één feest gevierd. Van heinde en ver kwamen de mensen naar de tempel in Jeruzalem. De betekenis was nog altijd : herdenking van de bevrijding uit Egypte en hoop op de komende verlossing door de beloofde Messias.
Zeer waarschijnlijk was het 'laatste avondmaal' van Jezus en zijn volgelingen, de discipelen, een Pesachviering. Het voldeed volgens de evangelieverhalen in elk geval aan belangrijke voorschriften en tradities van het Pesach. Men trof de voorgeschreven voorbereidingen de avond ervoor, de viering vond plaats in Jeruzalem na 19.00 uur, er werd wijn gedronken, brood gegeten en een loflied gezongen, het Hallel. De vereiste kruiden en woord 'ongezuurd' (brood) worden niet genoemd, maar dat kan komen doordat de evangelieschrijvers niet perse volledig pretendeerden te zijn en men zich bij de verslagen kennelijk concentreerde op wat men voor de eerste christenen van die tijd van belang vond.
De eerste christenen
Ook de eerste christenen, waarvan de meeste Joden waren, bleven aan de joodse feesten deelnemen, ook aan het Pesach. Gaandeweg werd het voor de christenen een tijd van vooral vasten ter herdenking van Christus' lijden en een nachtwake. Later is een scheiding tussen de feesten gekomen, alleen al door het instellen van verschillende data voor Pesach en Pasen.
313 t/m de Middeleeuwen
Na 313, het jaar van de zg. 'kerkvrede', kreeg het paasfeest een ander aanzien. Toen werd het liturgische Triduum Sacrum' ingevoerd : - Witte Donderdag (instelling van de Eucharistie en het priesterschap, begin van het lijden van Christus) - Goede Vrijdag (lijden en sterven) - Stille Zaterdag of Paaszaterdag (grafrust) - Paaszondag (opstanding).
Na de Middeleeuwen
Paaszondag in Portugal : de "compasso" gaat met een kruis, versierd met bloemen, de katholieke huizen van het dorp langs.
Van de Middeleeuwen tot halverwege de 20e eeuw werd de paaszondag min of meer apart gezien van de overige paasdagen. Het Tweede Vaticaans Concilie herstelde de liturgische eenheid van het Triduum. Ook hersteld is de Paaswake, die in de nacht van zaterdag op zondag gehouden wordt. Deze was in de reformatorische traditie vrijwel onbekend, maar wordt de laatste decennia her en der gevierd, ook in evangelische- en Pinksterkringen.
De Rooms-katholieke Kerk kent de traditie van de Kruisweg, een uitbeelding van de lijdensgang van Christus. Tijdens de paasdagen worden, met name in de rooms-katholieke streken, passiespelen uitgevoerd. Het bijwonen van uitvoeringen van passiemuziek van met name Bach is bij gelovigen en overigens ook bij niet-gelovigen, een populaire vorm van paasviering.
Ook het Carnaval, Aswoensdag, de Vastentijd en Palmpasen zijn vanouds voorbereidingen voor de paasviering.
Hoe ziet de goede week eruit
Palm zondag De zondag voor Pasen kennen we als palmzondag. Het is het begin van de Goede week. We vieren dan dat Jezus als een koning werd binnengehaald in Jerusalem. De mensen zwaaiden met palmtakken en zongen hosanna. Het is haast niet te geloven dat Jezus nog geen week later werd vermoord als een zware misdadiger !
Witte donderdag Op deze dag at Jezus voor het laatst met Zijn vrienden. We noemen dit het laatste avondmaal. Jezus zei, toen Hij het brood in stukken brak en ronddeelde : “Dit is mijn lichaam en het wordt voor iedereen gegeven”. En bij het ronddelen van de wijn zei Hij : “Dit is mijn bloed dat voor iedereen wordt vergoten”. Zijn vrienden snapte er toen niet veel van. Pas later toen Hij dood was begrepen ze wat Jezus bedoelde. In veel kerken wordt dit laatste avondmaal nog steeds gevierd. En in de Katholieke kerk zelfs elke zondag, daar heet het brood (lichaam van Jezus) de Eucharistie of Hostie.
Goede vrijdag Het is de vrijdag voor Pasen. Deze dag herdenken we dat Jezus is doodgegaan. Ze hebben Hem met spijkers aan het kruis geslagen, wat zal dat pijn hebben gedaan. Waarom zou dan toch deze dag Goede vrijdag worden genoemd ? Er was toch niks goeds aan, dat Jezus dood ging ! Goede vrijdag heet zo omdat Jezus Zijn leven aan ons allemaal GEGEVEN heeft. Dit deed Hij omdat, Hij onze dingen die we fout doen aan het kruis heeft gedragen. Dit betekent dat Hij ervoor zorgt dat God ons kan vergeven als we iets doen dat niet mag. Meestal doen we dan een ander verdriet of pijn. Als je er spijt van hebt kan God je vergeven en jij kunt dan ook naar de ander toe gaan en zeggen dat je spijt hebt.
Paaszaterdag Op paaszaterdag denken we aan Jezus die nu in het graf ligt, een uitgeholde grot met een grote zware steen ervoor. Het kruis is nu leeg en in veel kerken is het altaar nu leeggeruimd. Er liggen en staan geen bloemen, kaarsen of mooie kleden op het altaar (kerktafel waar de pastoor of dominee aan staat).
Net als andere feesten is ook Pasen een feest vol symboliek
De paashaas, het ei en de paasvuren zijn een paar van de bekendste voorbeelden. Waar hebben we deze symbolen eigenlijk aan te danken ?
Het ei Het maakt niet uit of je de heidense of christelijke versie van het feest voor ogen hebt. Het ei is bijna overal ter wereld symbool van de opstanding en dus hét symbool voor Pasen.
Al eeuwen lang worden eieren beschilderd. Vroeger kleurde men eieren in de kleuren van het altaar en liet men ze in de kerk wijden. Vanuit niet-christelijk oogpunt waren de heldere kleuren waarmee eieren werden beschilderd een weerspiegeling van het zonlicht in de lente.
Er werden vroeger al eierrolwedstrijden gehouden en eieren werden uitgewisseld tussen geliefden of (in de Middeleeuwen) aan bedienden cadeau gedaan. En nog steeds zijn eierspelletjes een leuke, ontspannen 'opleuking' van het Paasontbijt.
Het verstoppen van eieren hebben we te danken aan de oude gewoonte om eieren in akkers te begraven om deze vruchtbaar te maken. Nog steeds staan ouders op Paaszondag voor dag en dauw op om eieren te verstoppen die de kinderen even later met veel plezier en fanatisme mogen zoeken.
De haas De paashaas is wel een heel bijzonder dier. Niet alleen is hij onzichtbaar, maar ook zou hij een gouden vacht hebben. Niet zo vreemd dat over zijn ontstaan verschillende verhalen de ronde doen. Net als het ei, is de haas - vanwege zijn voortplantingsdrang - te zien als vruchtbaarheidssymbool. Het was niet voor niets een van de symbolen van de vruchtbaarheidsgodin Isjtar. Het konijn had voor ons wellicht meer voor de hand gelegen. Dit diertje werd echter pas in de Middeleeuwen in ons land gesignaleerd.
Een ander verhaal vertelt dat de paashaas eigenlijk een vogel is die zich zo had misdragen, dat hij voor straf in een haas werd veranderd. Nu mag hij nog maar één keer per jaar eieren leggen, die hij goed moet verstoppen. De meest logische verklaring lijkt wel te zijn dat eieren die door vogels in verlaten hazenlegers werden gelegd, per ongeluk werden aangezien voor 'hazeneieren'.
Het eerste eetbare paashaasje werd begin 1800 in Duitsland gemaakt van deeg en suiker. De Paashaas werd door Duitse immigranten in de achttiende eeuw meegenomen naar Amerika. In die tijd bouwden kinderen een nest waarin de Paashaas zijn eitjes kon achterlaten...
Vervolg op Geopereerd door Prof. Dr. Bauer – Een verslag cfr. dit blog dd. 14-03-07
Vincent getuigt :
Om te beginnen allemaal héle fijne Paasdagen !
Ik heb beloofd jullie op de hoogte te zullen houden van mijn gezondheidstoestand :
Gisteren was het precies één maand geleden dat ik in Zwitserland door Prof.Dr.Dr. Bauer ben geopereerd. Helaas kan ik nog géén afname van mijn fibromyalgie- en vermoeidheidsklachten melden. Behalve dan dat het herstel van de wond zeer voorspoedig gaat en mijn geopereerde rechterarm langzamerhand zijn functionaliteit terugkrijgt. Ik mag hem overigens nog niet volledig belasten en de fijne motoriek van de hand, zoals bijvoorbeeld bij het schrijven, gaat nog tamelijk moeizaam. Ik heb wel de indruk dat – recente episoden van extreme vermoeidheid daargelaten – de gedurende de operatie ontstane 'helderheid in mijn hoofd' is gebleven. Daarnaast heb ik momenteel merkwaardigerwijs veel pijn aan mijn (niet geopereerde) linkerarm aan de binnenzijde van de elleboog en aan de rechterzijde van mijn hoofd... Wie het weet, die mag het zeggen.
Laten we hopen dat de komende maanden zal blijken dat ik – zoals vooraf door Dr. Bauer aangegeven – inderdaad last gehad bleek te hebben van zogenaamde 'homeopatische verschijnselen' (waarmee hij bedoelt dat je klachten eerst toenemen voordat ze gaan afnemen)... Blijven duimen dus !
Naarmate de tijd vordert merken jullie dat mijn e-mails gelukkig steeds korter worden. Dat is op zichzelf in ieder geval alvast wèl goed nieuws, toch ?
Niet de ‘kwantiteit’ maar de ‘kwaliteit’ telt, een veelvoorkomende uitspraak. Maar wat als die kwaliteit geen vanzelfsprekend begrip is.
Voor mensen die lijden aan een chronische aandoening is het begrip ‘levenskwaliteit’ niet vanzelfsprekend. Verschillende fysieke en mentale klachten kunnen tot ernstige beperkingen lijden en bij vele chronische aandoeningen is het verloop van de ziekte nagenoeg onvoorspelbaar. Personen staan voor een leven met onzekerheid en angst.
Tot op heden beperkt de behandeling zich in vele gevallen tot het verlichten van de symptomen, al dan niet met een gunstig resultaat.
Naast het verlichten van de klachten zijn er nog andere factoren die de levenskwaliteit kunnen verbeteren.
Deze studie tracht aan de hand van vragenlijsten de onderliggende mechanismen voor het aantasten van de levenskwaliteit bij mensen lijdend aan een chronische aandoening (multiple sclerose, chronisch vermoeidheidsyndroom en reumatoïde artritis) te onderzoeken. De opgedane kennis wordt gebruikt om de begeleiding van deze patiënten te verbeteren en te streven naar een betere ‘kwaliteit’ van leven. Tot op heden bestaat er immers geen consensus over de beste benadering/ behandeling van deze problematieken.
Doe mee ! Indien u lijdt aan een chronische aandoening (CVS, MS of reumatoïde artritis en tussen de 18 en 58 jaar bent) die u beperkt in uw dagdagelijkse bezigheden (tot max 50%), kan u ons helpen door twee bundeltjes vragenlijsten in te vullen.
Deze studie heeft tot doel uw levenskwaliteit te verhogen en voegt dadelijk daad bij het woord. Iedere deelnemer ontvangt op het eind van de studie een uitstapje met vrienden naar de cinema.
Op deze website vindt u meer informatie over het VN-verdrag voor gelijke rechten voor personen met een handicap. Het werd op 13 december 2006 in New York gestemd.
De rechten, vrijheden en vernieuwende principes van dit Verdrag zullen door de lidstaten van de Verenigde Naties in de eigen regelgeving moeten worden omgezet. Dit eerste mensenrechtenverdrag van de 21e eeuw is bovendien afdwingbaar.
De visie waarmee en wijze waarop, binnen België en onze gemeenschappen en gewesten, deze invoering gebeurt is natuurlijk bepalend voor het effect van dit Verdrag voor de antidiscriminatie en sociale inclusie van personen met een handicap.
Meer dan 50 organisaties van personen met een handicap of chronische ziekte en talloze andere organisaties uit het middenveld, roepen op 30 maart 2007 de Vlaamse en federale overheden en politieke verantwoordelijken op om zich voluit te engageren voor de invoering van dit Verdrag. Naar de letter maar ook naar de geest van de tekst.
De overheid kan dit echter niet alleen. Ook u, lezer, hebt hierin een verantwoordelijkheid.
Pas dan zal dit Verdrag, naar de woorden van Kofi Annan, de ‘ochtend van een nieuw tijdperk’ inluiden voor 10% van onze bevolking.
VN-verdrag voor gelijke rechten van personen met een handicap Oproep aan de Vlaamse en federale overheden tot invoering van het VN-verdrag ReumaNet vzw Tervuursevest 23 bus 101 B-3001 Heverlee E-mail : info@reumanet.be – Website : http://www.reumanet.be/index.html
Volgende oproep werd op vrijdag 30 maart 2007 - de dag vanaf wanneer in New York de lidstaten van de Verenigde Naties het Verdrag kunnen onderschrijven - gericht aan de beleidsmakers en politieke verantwoordelijken op Vlaams en federaal niveau.
Want na dit onderschrijven begint het werk pas… ! :
Oproep aan de Vlaamse en federale beleidsmakers
- aan de leden van de federale regering en federaal parlement - aan de leden van de Vlaamse regering en het Vlaams parlement - aan de voorzitters en studiediensten van de Vlaamse politieke partijen - aan de leidinggevende ambtenaren van de Vlaamse en federale administraties
om zich te engageren voor het VN-verdrag voor gelijke rechten van personen met een handicap.
Op woensdag 13 december 2006 nam de Algemene Vergadering van de Verenigde Naties in consensus het nieuwe bindende 'Verdrag voor gelijke rechten van personen met een handicap' aan. Secretaris-generaal Kofi Annan noemde dit feit ‘the dawn of a new era’. Het is het eerste mensenrechtenverdrag van de 21e eeuw en legt aan de 192 lidstaten van de VN een bindende regelgeving op met betrekking tot de rechten van personen met een handicap.
Uitgangspunt voor het Verdrag is een inclusieve en diverse samenleving.
Het garandeert het genot van meer dan 20 mensenrechten en vrijheden: onder andere de deelname aan het gewoon onderwijs en regulier werk, persoonlijke mobiliteit, (keuze in) zorg en revalidatie, integrale toegankelijkheid, het recht op leven en de bescherming van de integriteit van de persoon.
Sociale achterstelling dient te worden bestreden door een regelgeving voor antidiscriminatie en redelijke aanpassingen. Overheden dienen te werken aan een mentaliteitswijziging en correcte beeldvorming ten opzichte van personen met een handicap.
Zoals ook het geval was bij het totstandkomen van dit Verdrag dienen mensen met een handicap en hun vertegenwoordigende organisaties bij de ontwikkeling van een dergelijk beleid actief te worden betrokken. Het Verdrag reikt mechanismen aan voor de monitoring van deze rechten en de invoering van het Verdrag.
Vanaf 30 maart 2007 zal het Verdrag, en een optioneel protocol, kunnen worden ondertekend door de lidstaten. We vertrouwen er op dat de Belgische overheid op 30 maart beide documenten zal ondertekenen en we roepen de leden van de verschillende parlementen op om het Verdrag vervolgens snel en in eenstemmigheid te ratificeren.
Het Verdrag reikt een onmisbare hefboom aan voor de sociale insluiting van personen met een handicap in onze samenleving. Het zal voor België en Vlaanderen echter een lege doos blijven zonder een krachtig engagement van onze regeringen om de vernieuwende principes en rechten en dit zowel voor als na de verkiezingen van 2007 en 2009, in te voeren in de eigen regelgeving.
De onderstaande organisaties van personen met een handicap of chronische ziekte vragen de huidige en toekomstige politieke verantwoordelijken dringend, om de invoering van het 'Verdrag voor de rechten van personen met een handicap' als een prioriteit mee te nemen in het lopende beleid, de toekomstige regeerakkoorden en beleidsvoornemens. U kan hiervoor een beroep doen op onze expertise.
EU signs new UN treaty on disability rights - Part I
"The existing human rights system was meant to promote and protect the rights of persons with disabilities, but the existing standards and mechanisms have in fact failed to provide adequate protection to the specific cases of persons with disabilities. It is clearly time for the UN to remedy this shortcoming." Louise Arbour United Nations Human Rights Commissioner
EU signs new UN treaty on disability rights
Part I
'EU tekent VN conventie voor de rechten van gehandicapten'
Brussels, 30-03-07
The European Community will today sign a new UN treaty on disability rights on its opening day for signature in New York. This is the first time the Community signs a core UN human rights convention. The Convention (see below) which covers the rights of people with disabilities aims to ensure that people with disabilities enjoy human rights and fundamental freedoms on an equal basis with everyone else. It will provide protection for 50 million EU citizens and 650 million people with disabilities worldwide.
"This Convention recognises at an international level that disability is a human rights issue," said Vladimír Špidla, EU Commissioner for Employment, Social Affairs and Equal Opportunities. "I welcome the unprecedented involvement of people with disabilities throughout the negotiation process and am proud that the EU and its members will be among the first to sign the Convention. It is a success for the EU as it reflects all the core elements of our disability strategy: anti-discrimination, equal opportunities and active inclusion. It also shows that Europe is at the forefront of strengthening rights for people with disabilities worldwide and is an important achievement in the European Year of Equal Opportunities for All."
The new treaty is the first comprehensive human rights convention to be adopted this century. It follows long-standing efforts by disability organisations and an increasing international recognition that existing UN human rights treaties failed to fully protect people with disabilities, who continue to suffer discrimination. This view is widely shared by Europeans, 53% of whom believe that discrimination based on disability is widespread, according to a recent Eurobarometer survey.
The European Commission's active role in the negotiations ensured that the Convention is in line with relevant EU legislation and jurisprudence - for example it takes on the definition of discrimination. In addition, the denial of 'reasonable accommodation' for people with disabilities – set out in EU law since 2000 – is now internationally recognised as a form of discrimination.
The text also acknowledges that women with disabilities are more likely to suffer from multiple forms of discrimination and accordingly calls for measures combining mainstreaming of gender issues and specific gender sensitive measures in the disability field.
Member States have given a mandate the European Commission to negotiate and sign on behalf of the Community on matters falling under Community competence, but the EU Member States themselves will also sign the Convention individually. Signature constitutes the first step of becoming formally party to the Convention. It will enter into force when ratified by 20 countries.
Convention on the Rights of Persons with Disabilities
Preamble
The States Parties to the present Convention,
Recalling the principles proclaimed in the Charter of the United Nations which recognize the inherent dignity and worth and the equal and inalienable rights of all members of the human family as the foundation of freedom, justice and peace in the world,
Recognizing that the United Nations, in the Universal Declaration of Human Rights and in the International Covenants on Human Rights, has proclaimed and agreed that everyone is entitled to all the rights and freedoms set forth therein, without distinction of any kind,
Reaffirming the universality, indivisibility, interdependence and interrelatedness of all human rights and fundamental freedoms and the need for persons with disabilities to be guaranteed their full enjoyment without discrimination,
Recalling the International Covenant on Economic, Social and Cultural Rights, the International Covenant on Civil and Political Rights, the International Convention on the Elimination of All Forms of Racial Discrimination, the Convention on the Elimination of All Forms of Discrimination against Women, the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, the Convention on the Rights of the Child, and the International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families,
Recognizing that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others,
Recognizing the importance of the principles and policy guidelines contained in the World Programme of Action concerning Disabled Persons and in the Standard Rules on the Equalization of Opportunities for Persons with Disabilities in influencing the promotion, formulation and evaluation of the policies, plans, programmes and actions at the national, regional and international levels to further equalize opportunities for persons with disabilities,
Emphasizing the importance of mainstreaming disability issues as an integral part of relevant strategies of sustainable development,
Recognizing also that discrimination against any person on the basis of disability is a violation of the inherent dignity and worth of the human person,
Recognizing further the diversity of persons with disabilities,
Recognizing the need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support,
Concerned that, despite these various instruments and undertakings, persons with disabilities continue to face barriers in their participation as equal members of society and violations of their human rights in all parts of the world,
Recognizing the importance of international cooperation for improving the living conditions of persons with disabilities in every country, particularly in developing countries,
Recognizing the valued existing and potential contributions made by persons with disabilities to the overall well-being and diversity of their communities, and that the promotion of the full enjoyment by persons with disabilities of their human rights and fundamental freedoms and of full participation by persons with disabilities will result in their enhanced sense of belonging and in significant advances in the human, social and economic development of society and the eradication of poverty,
Recognizing the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices,
Considering that persons with disabilities should have the opportunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them,
Concerned about the difficult conditions faced by persons with disabilities who are subject to multiple or aggravated forms of discrimination on the basis of race, colour, sex, language, religion, political or other opinion, national, ethnic, indigenous or social origin, property, birth, age or other status,
Recognizing that women and girls with disabilities are often at greater risk, both within and outside the home of violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation,
Recognizing that children with disabilities should have full enjoyment of all human rights and fundamental freedoms on an equal basis with other children, and recalling obligations to that end undertaken by States Parties to the Convention on the Rights of the Child,
Emphasizing the need to incorporate a gender perspective in all efforts to promote the full enjoyment of human rights and fundamental freedoms by persons with disabilities,
Highlighting the fact that the majority of persons with disabilities live in conditions of poverty, and in this regard recognizing the critical need to address the negative impact of poverty on persons with disabilities,
Bearing in mind that conditions of peace and security based on full respect for the purposes and principles contained in the Charter of the United Nations and observance of applicable human rights instruments are indispensable for the full protection of persons with disabilities, in particular during armed conflicts and foreign occupation,
Recognizing the importance of accessibility to the physical, social, economic and cultural environment, to health and education and to information and communication, in enabling persons with disabilities to fully enjoy all human rights and fundamental freedoms,
Realizing that the individual, having duties to other individuals and to the community to which he or she belongs, is under a responsibility to strive for the promotion and observance of the rights recognized in the International Bill of Human Rights,
Convinced that the family is the natural and fundamental group unit of society and is entitled to protection by society and the State, and that persons with disabilities and their family members should receive the necessary protection and assistance to enable families to contribute towards the full and equal enjoyment of the rights of persons with disabilities,
Convinced that a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities will make a significant contribution to redressing the profound social disadvantage of persons with disabilities and promote their participation in the civil, political, economic, social and cultural spheres with equal opportunities, in both developing and developed countries
have agreed as follows :
Article 1 - Purpose
The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.
Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.
Article 2 - Definitions
For the purposes of the present Convention:
"Communication" includes languages, display of text, Braille, tactile communication, large print, accessible multimedia as well as written, audio, plain-language, human-reader and augmentative and alternative modes, means and formats of communication, including accessible information and communication technology;
"Language" includes spoken and signed languages and other forms of non spoken languages;
"Discrimination on the basis of disability" means any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation;
"Reasonable accommodation" means necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms;
"Universal design" means the design of products, environments, programmes and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design. “Universal design” shall not exclude assistive devices for particular groups of persons with disabilities where this is needed.
Article 3 - General principles
The principles of the present Convention shall be:
Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
Non-discrimination;
Full and effective participation and inclusion in society;
Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;
Equality of opportunity;
Accessibility;
Equality between men and women;
Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.
Article 4 - General obligations
1. States Parties undertake to ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability. To this end, States Parties undertake:
To adopt all appropriate legislative, administrative and other measures for the implementation of the rights recognized in the present Convention;
To take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities;
To take into account the protection and promotion of the human rights of persons with disabilities in all policies and programmes;
To refrain from engaging in any act or practice that is inconsistent with the present Convention and to ensure that public authorities and institutions act in conformity with the present Convention;
To take all appropriate measures to eliminate discrimination on the basis of disability by any person, organization or private enterprise;
To undertake or promote research and development of universally designed goods, services, equipment and facilities, as defined in article 2 of the present Convention, which should require the minimum possible adaptation and the least cost to meet the specific needs of a person with disabilities, to promote their availability and use, and to promote universal design in the development of standards and guidelines;
To undertake or promote research and development of, and to promote the availability and use of new technologies, including information and communications technologies, mobility aids, devices and assistive technologies, suitable for persons with disabilities, giving priority to technologies at an affordable cost;
To provide accessible information to persons with disabilities about mobility aids, devices and assistive technologies, including new technologies, as well as other forms of assistance, support services and facilities;
To promote the training of professionals and staff working with persons with disabilities in the rights recognized in this Convention so as to better provide the assistance and services guaranteed by those rights.
2. With regard to economic, social and cultural rights, each State Party undertakes to take measures to the maximum of its available resources and, where needed, within the framework of international cooperation, with a view to achieving progressively the full realization of these rights, without prejudice to those obligations contained in the present Convention that are immediately applicable according to international law.
3. In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations.
4. Nothing in the present Convention shall affect any provisions which are more conducive to the realization of the rights of persons with disabilities and which may be contained in the law of a State Party or international law in force for that State. There shall be no restriction upon or derogation from any of the human rights and fundamental freedoms recognized or existing in any State Party to the present Convention pursuant to law, conventions, regulation or custom on the pretext that the present Convention does not recognize such rights or freedoms or that it recognizes them to a lesser extent.
5. The provisions of the present Convention shall extend to all parts of federal states without any limitations or exceptions.
Article 5 - Equality and non-discrimination
1. States Parties recognize that all persons are equal before and under the law and are entitled without any discrimination to the equal protection and equal benefit of the law.
2. States Parties shall prohibit all discrimination on the basis of disability and guarantee to persons with disabilities equal and effective legal protection against discrimination on all grounds.
3. In order to promote equality and eliminate discrimination, States Parties shall take all appropriate steps to ensure that reasonable accommodation is provided.
4. Specific measures which are necessary to accelerate or achieve de facto equality of persons with disabilities shall not be considered discrimination under the terms of the present Convention.
Article 6 - Women with disabilities
1. States Parties recognize that women and girls with disabilities are subject to multiple discrimination, and in this regard shall take measures to ensure the full and equal enjoyment by them of all human rights and fundamental freedoms.
2. States Parties shall take all appropriate measures to ensure the full development, advancement and empowerment of women, for the purpose of guaranteeing them the exercise and enjoyment of the human rights and fundamental freedoms set out in the present Convention.
Article 7 - Children with disabilities
1. States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children.
2. In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration.
3. States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.
Article 8 - Awareness-raising
1. States Parties undertake to adopt immediate, effective and appropriate measures:
To raise awareness throughout society, including at the family level, regarding persons with disabilities, and to foster respect for the rights and dignity of persons with disabilities;
To combat stereotypes, prejudices and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life;
To promote awareness of the capabilities and contributions of persons with disabilities.
Measures to this end include:
Initiating and maintaining effective public awareness campaigns designed:
To nurture receptiveness to the rights of persons with disabilities;
To promote positive perceptions and greater social awareness towards persons with disabilities;
To promote recognition of the skills, merits and abilities of persons with disabilities, and of their contributions to the workplace and the labour market;
Fostering at all levels of the education system, including in all children from an early age, an attitude of respect for the rights of persons with disabilities;
Encouraging all organs of the media to portray persons with disabilities in a manner consistent with the purpose of the present Convention;
Promoting awareness-training programmes regarding persons with disabilities and the rights of persons with disabilities.
Article 9 - Accessibility
1. To enable persons with disabilities to live independently and participate fully in all aspects of life, States Parties shall take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, to transportation, to information and communications, including information and communications technologies and systems, and to other facilities and services open or provided to the public, both in urban and in rural areas. These measures, which shall include the identification and elimination of obstacles and barriers to accessibility, shall apply to, inter alia:
Buildings, roads, transportation and other indoor and outdoor facilities, including schools, housing, medical facilities and workplaces;
Information, communications and other services, including electronic services and emergency services.
2. States Parties shall also take appropriate measures to:
Develop, promulgate and monitor the implementation of minimum standards and guidelines for the accessibility of facilities and services open or provided to the public;
Ensure that private entities that offer facilities and services which are open or provided to the public take into account all aspects of accessibility for persons with disabilities;
Provide training for stakeholders on accessibility issues facing persons with disabilities;
Provide in buildings and other facilities open to the public signage in Braille and in easy to read and understand forms;
Provide forms of live assistance and intermediaries, including guides, readers and professional sign language interpreters, to facilitate accessibility to buildings and other facilities open to the public;
Promote other appropriate forms of assistance and support to persons with disabilities to ensure their access to information;
Promote access for persons with disabilities to new information and communications technologies and systems, including the Internet;
Promote the design, development, production and distribution of accessible information and communications technologies and systems at an early stage, so that these technologies and systems become accessible at minimum cost.
Article 10 - Right to life
States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.
Article 11 - Situations of risk and humanitarian emergencies
States Parties shall take, in accordance with their obligations under international law, including international humanitarian law and international human rights law, all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters.
Article 12 - Equal recognition before the law
1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.
2. States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.
3. States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.
4. States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person’s rights and interests.
5. Subject to the provisions of this article, States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property.
Article 13 - Access to justice
1. States Parties shall ensure effective access to justice for persons with disabilities on an equal basis with others, including through the provision of procedural and age-appropriate accommodations, in order to facilitate their effective role as direct and indirect participants, including as witnesses, in all legal proceedings, including at investigative and other preliminary stages.
2. In order to help to ensure effective access to justice for persons with disabilities, States Parties shall promote appropriate training for those working in the field of administration of justice, including police and prison staff.
Article 14 - Liberty and security of the person
1. States Parties shall ensure that persons with disabilities, on an equal basis with others:
Enjoy the right to liberty and security of person;
Are not deprived of their liberty unlawfully or arbitrarily, and that any deprivation of liberty is in conformity with the law, and that the existence of a disability shall in no case justify a deprivation of liberty.
2. States Parties shall ensure that if persons with disabilities are deprived of their liberty through any process, they are, on an equal basis with others, entitled to guarantees in accordance with international human rights law and shall be treated in compliance with the objectives and principles of this Convention, including by provision of reasonable accommodation.
Article 15 - Freedom from torture or cruel, inhuman or degrading treatment or punishment
1. No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. In particular, no one shall be subjected without his or her free consent to medical or scientific experimentation.
2. States Parties shall take all effective legislative, administrative, judicial or other measures to prevent persons with disabilities, on an equal basis with others, from being subjected to torture or cruel, inhuman or degrading treatment or punishment.
Article 16 - Freedom from exploitation, violence and abuse
1. States Parties shall take all appropriate legislative, administrative, social, educational and other measures to protect persons with disabilities, both within and outside the home, from all forms of exploitation, violence and abuse, including their gender-based aspects.
2. States Parties shall also take all appropriate measures to prevent all forms of exploitation, violence and abuse by ensuring, inter alia, appropriate forms of gender- and age-sensitive assistance and support for persons with disabilities and their families and caregivers, including through the provision of information and education on how to avoid, recognize and report instances of exploitation, violence and abuse. States Parties shall ensure that protection services are age-, gender- and disability-sensitive.
3. In order to prevent the occurrence of all forms of exploitation, violence and abuse, States Parties shall ensure that all facilities and programmes designed to serve persons with disabilities are effectively monitored by independent authorities.
4. States Parties shall take all appropriate measures to promote the physical, cognitive and psychological recovery, rehabilitation and social reintegration of persons with disabilities who become victims of any form of exploitation, violence or abuse, including through the provision of protection services. Such recovery and reintegration shall take place in an environment that fosters the health, welfare, self-respect, dignity and autonomy of the person and takes into account gender- and age-specific needs.
5. States Parties shall put in place effective legislation and policies, including women- and child-focused legislation and policies, to ensure that instances of exploitation, violence and abuse against persons with disabilities are identified, investigated and, where appropriate, prosecuted.
Article 17 - Protecting the integrity of the person
Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.
Article 18 - Liberty of movement and nationality
1. States Parties shall recognize the rights of persons with disabilities to liberty of movement, to freedom to choose their residence and to a nationality, on an equal basis with others, including by ensuring that persons with disabilities:
Have the right to acquire and change a nationality and are not deprived of their nationality arbitrarily or on the basis of disability;
Are not deprived, on the basis of disability, of their ability to obtain, possess and utilize documentation of their nationality or other documentation of identification, or to utilize relevant processes such as immigration proceedings, that may be needed to facilitate exercise of the right to liberty of movement;
Are free to leave any country, including their own;
Are not deprived, arbitrarily or on the basis of disability, of the right to enter their own country.
2. Children with disabilities shall be registered immediately after birth and shall have the right from birth to a name, the right to acquire a nationality and, as far as possible, the right to know and be cared for by their parents.
Article 19 - Living independently and being included in the community
States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.
Article 20 - Personal mobility
States Parties shall take effective measures to ensure personal mobility with the greatest possible independence for persons with disabilities, including by:
Facilitating the personal mobility of persons with disabilities in the manner and at the time of their choice, and at affordable cost;
Facilitating access by persons with disabilities to quality mobility aids, devices, assistive technologies and forms of live assistance and intermediaries, including by making them available at affordable cost;
Providing training in mobility skills to persons with disabilities and to specialist staff working with persons with disabilities;
Encouraging entities that produce mobility aids, devices and assistive technologies to take into account all aspects of mobility for persons with disabilities.
Article 21 - Freedom of expression and opinion, and access to information
States Parties shall take all appropriate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice, as defined in article 2 of the present Convention, including by:
Providing information intended for the general public to persons with disabilities in accessible formats and technologies appropriate to different kinds of disabilities in a timely manner and without additional cost;
Accepting and facilitating the use of sign languages, Braille, augmentative and alternative communication, and all other accessible means, modes and formats of communication of their choice by persons with disabilities in official interactions;
Urging private entities that provide services to the general public, including through the Internet, to provide information and services in accessible and usable formats for persons with disabilities;
Encouraging the mass media, including providers of information through the Internet, to make their services accessible to persons with disabilities;
Recognizing and promoting the use of sign languages.
Article 22 - Respect for privacy
1. No person with disabilities, regardless of place of residence or living arrangements, shall be subjected to arbitrary or unlawful interference with his or her privacy, family, home or correspondence or other types of communication or to unlawful attacks on his or her honour and reputation. Persons with disabilities have the right to the protection of the law against such interference or attacks.
2. States Parties shall protect the privacy of personal, health and rehabilitation information of persons with disabilities on an equal basis with others.
Article 23 - Respect for home and the family
1. States Parties shall take effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others, so as to ensure that:
The right of all persons with disabilities who are of marriageable age to marry and to found a family on the basis of free and full consent of the intending spouses is recognized;
The rights of persons with disabilities to decide freely and responsibly on the number and spacing of their children and to have access to age-appropriate information, reproductive and family planning education are recognized, and the means necessary to enable them to exercise these rights are provided;
Persons with disabilities, including children, retain their fertility on an equal basis with others.
2. States Parties shall ensure the rights and responsibilities of persons with disabilities, with regard to guardianship, wardship, trusteeship, adoption of children or similar institutions, where these concepts exist in national legislation; in all cases the best interests of the child shall be paramount. States Parties shall render appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities.
3. States Parties shall ensure that children with disabilities have equal rights with respect to family life. With a view to realizing these rights, and to prevent concealment, abandonment, neglect and segregation of children with disabilities, States Parties shall undertake to provide early and comprehensive information, services and support to children with disabilities and their families.
4. States Parties shall ensure that a child shall not be separated from his or her parents against their will, except when competent authorities subject to judicial review determine, in accordance with applicable law and procedures, that such separation is necessary for the best interests of the child. In no case shall a child be separated from parents on the basis of a disability of either the child or one or both of the parents.
5. States Parties shall, where the immediate family is unable to care for a child with disabilities, undertake every effort to provide alternative care within the wider family, and failing that, within the community in a family setting.
EU signs new UN treaty on disability rights - Part II
EU signs new UN treaty on disability rights
Part II
'EU tekent VN conventie voor de rechten van gehandicapten'
Article 24 - Education
1. States Parties recognize the right of persons with disabilities to education. With a view to realizing this right without discrimination and on the basis of equal opportunity, States Parties shall ensure an inclusive education system at all levels and life long learning directed to:
The full development of human potential and sense of dignity and self-worth, and the strengthening of respect for human rights, fundamental freedoms and human diversity;
The development by persons with disabilities of their personality, talents and creativity, as well as their mental and physical abilities, to their fullest potential;
Enabling persons with disabilities to participate effectively in a free society.
2. In realizing this right, States Parties shall ensure that:
Persons with disabilities are not excluded from the general education system on the basis of disability, and that children with disabilities are not excluded from free and compulsory primary education, or from secondary education, on the basis of disability;
Persons with disabilities can access an inclusive, quality and free primary education and secondary education on an equal basis with others in the communities in which they live;
Reasonable accommodation of the individual’s requirements is provided;
Persons with disabilities receive the support required, within the general education system, to facilitate their effective education;
Effective individualized support measures are provided in environments that maximize academic and social development, consistent with the goal of full inclusion.
3. States Parties shall enable persons with disabilities to learn life and social development skills to facilitate their full and equal participation in education and as members of the community. To this end, States Parties shall take appropriate measures, including:
Facilitating the learning of Braille, alternative script, augmentative and alternative modes, means and formats of communication and orientation and mobility skills, and facilitating peer support and mentoring;
Facilitating the learning of sign language and the promotion of the linguistic identity of the deaf community;
Ensuring that the education of persons, and in particular children, who are blind, deaf or deafblind, is delivered in the most appropriate languages and modes and means of communication for the individual, and in environments which maximize academic and social development.
4. In order to help ensure the realization of this right, States Parties shall take appropriate measures to employ teachers, including teachers with disabilities, who are qualified in sign language and/or Braille, and to train professionals and staff who work at all levels of education. Such training shall incorporate disability awareness and the use of appropriate augmentative and alternative modes, means and formats of communication, educational techniques and materials to support persons with disabilities.
5. States Parties shall ensure that persons with disabilities are able to access general tertiary education, vocational training, adult education and lifelong learning without discrimination and on an equal basis with others. To this end, States Parties shall ensure that reasonable accommodation is provided to persons with disabilities.
Article 25 - Health
States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:
Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;
Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;
Provide these health services as close as possible to people’s own communities, including in rural areas;
Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;
Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner;
Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.
Article 26 - Habilitation and rehabilitation
1. States Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services, in such a way that these services and programmes:
Begin at the earliest possible stage, and are based on the multidisciplinary assessment of individual needs and strengths;
Support participation and inclusion in the community and all aspects of society, are voluntary, and are available to persons with disabilities as close as possible to their own communities, including in rural areas.
2. States Parties shall promote the development of initial and continuing training for professionals and staff working in habilitation and rehabilitation services.
3. States Parties shall promote the availability, knowledge and use of assistive devices and technologies, designed for persons with disabilities, as they relate to habilitation and rehabilitation.
Article 27 - Work and employment
1. States Parties recognize the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities. States Parties shall safeguard and promote the realization of the right to work, including for those who acquire a disability during the course of employment, by taking appropriate steps, including through legislation, to, inter alia:
Prohibit discrimination on the basis of disability with regard to all matters concerning all forms of employment, including conditions of recruitment, hiring and employment, continuance of employment, career advancement and safe and healthy working conditions;
Protect the rights of persons with disabilities, on an equal basis with others, to just and favourable conditions of work, including equal opportunities and equal remuneration for work of equal value, safe and healthy working conditions, including protection from harassment, and the redress of grievances;
Ensure that persons with disabilities are able to exercise their labour and trade union rights on an equal basis with others;
Enable persons with disabilities to have effective access to general technical and vocational guidance programmes, placement services and vocational and continuing training;
Promote employment opportunities and career advancement for persons with disabilities in the labour market, as well as assistance in finding, obtaining, maintaining and returning to employment;
Promote opportunities for self-employment, entrepreneurship, the development of cooperatives and starting one’s own business;
Employ persons with disabilities in the public sector;
Promote the employment of persons with disabilities in the private sector through appropriate policies and measures, which may include affirmative action programmes, incentives and other measures;
Ensure that reasonable accommodation is provided to persons with disabilities in the workplace;
Promote the acquisition by persons with disabilities of work experience in the open labour market;
Promote vocational and professional rehabilitation, job retention and return-to-work programmes for persons with disabilities.
2. States Parties shall ensure that persons with disabilities are not held in slavery or in servitude, and are protected, on an equal basis with others, from forced or compulsory labour.
Article 28 - Adequate standard of living and social protection
1. States Parties recognize the right of persons with disabilities to an adequate standard of living for themselves and their families, including adequate food, clothing and housing, and to the continuous improvement of living conditions, and shall take appropriate steps to safeguard and promote the realization of this right without discrimination on the basis of disability.
2. States Parties recognize the right of persons with disabilities to social protection and to the enjoyment of that right without discrimination on the basis of disability, and shall take appropriate steps to safeguard and promote the realization of this right, including measures:
To ensure equal access by persons with disabilities to clean water services, and to ensure access to appropriate and affordable services, devices and other assistance for disability-related needs;
To ensure access by persons with disabilities, in particular women and girls with disabilities and older persons with disabilities, to social protection programmes and poverty reduction programmes;
To ensure access by persons with disabilities and their families living in situations of poverty to assistance from the State with disability-related expenses, including adequate training, counselling, financial assistance and respite care;
To ensure access by persons with disabilities to public housing programmes;
To ensure equal access by persons with disabilities to retirement benefits and programmes.
Article 29 - Participation in political and public life
States Parties shall guarantee to persons with disabilities political rights and the opportunity to enjoy them on an equal basis with others and shall undertake to :
Ensure that persons with disabilities can effectively and fully participate in political and public life on an equal basis with others, directly or through freely chosen representatives, including the right and opportunity for persons with disabilities to vote and be elected, inter alia, by :
Ensuring that voting procedures, facilities and materials are appropriate, accessible and easy to understand and use;
Protecting the right of persons with disabilities to vote by secret ballot in elections and public referendums without intimidation, and to stand for elections, to effectively hold office and perform all public functions at all levels of government, facilitating the use of assistive and new technologies where appropriate;
Guaranteeing the free expression of the will of persons with disabilities as electors and to this end, where necessary, at their request, allowing assistance in voting by a person of their own choice;
Promote actively an environment in which persons with disabilities can effectively and fully participate in the conduct of public affairs, without discrimination and on an equal basis with others, and encourage their participation in public affairs, including:
Participation in non-governmental organizations and associations concerned with the public and political life of the country, and in the activities and administration of political parties;
Forming and joining organizations of persons with disabilities to represent persons with disabilities at international, national, regional and local levels.
Article 30 - Participation in cultural life, recreation, leisure and sport
1. States Parties recognize the right of persons with disabilities to take part on an equal basis with others in cultural life, and shall take all appropriate measures to ensure that persons with disabilities:
Enjoy access to cultural materials in accessible formats;
Enjoy access to television programmes, films, theatre and other cultural activities, in accessible formats;
Enjoy access to places for cultural performances or services, such as theatres, museums, cinemas, libraries and tourism services, and, as far as possible, enjoy access to monuments and sites of national cultural importance.
2. States Parties shall take appropriate measures to enable persons with disabilities to have the opportunity to develop and utilize their creative, artistic and intellectual potential, not only for their own benefit, but also for the enrichment of society.
3. States Parties shall take all appropriate steps, in accordance with international law, to ensure that laws protecting intellectual property rights do not constitute an unreasonable or discriminatory barrier to access by persons with disabilities to cultural materials.
4. Persons with disabilities shall be entitled, on an equal basis with others, to recognition and support of their specific cultural and linguistic identity, including sign languages and deaf culture.
5. With a view to enabling persons with disabilities to participate on an equal basis with others in recreational, leisure and sporting activities, States Parties shall take appropriate measures:
To encourage and promote the participation, to the fullest extent possible, of persons with disabilities in mainstream sporting activities at all levels;
To ensure that persons with disabilities have an opportunity to organize, develop and participate in disability-specific sporting and recreational activities and, to this end, encourage the provision, on an equal basis with others, of appropriate instruction, training and resources;
To ensure that persons with disabilities have access to sporting, recreational and tourism venues;
To ensure that children with disabilities have equal access with other children to participation in play, recreation and leisure and sporting activities, including those activities in the school system;
To ensure that persons with disabilities have access to services from those involved in the organization of recreational, tourism, leisure and sporting activities.
Article 31 - Statistics and data collection
1. States Parties undertake to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention. The process of collecting and maintaining this information shall:
Comply with legally established safeguards, including legislation on data protection, to ensure confidentiality and respect for the privacy of persons with disabilities;
Comply with internationally accepted norms to protect human rights and fundamental freedoms and ethical principles in the collection and use of statistics.
2. The information collected in accordance with this article shall be disaggregated, as appropriate, and used to help assess the implementation of States Parties’ obligations under the present Convention and to identify and address the barriers faced by persons with disabilities in exercising their rights.
3. States Parties shall assume responsibility for the dissemination of these statistics and ensure their accessibility to persons with disabilities and others.
Article 32 - International cooperation
1. States Parties recognize the importance of international cooperation and its promotion, in support of national efforts for the realization of the purpose and objectives of the present Convention, and will undertake appropriate and effective measures in this regard, between and among States and, as appropriate, in partnership with relevant international and regional organizations and civil society, in particular organizations of persons with disabilities. Such measures could include, inter alia:
Ensuring that international cooperation, including international development programmes, is inclusive of and accessible to persons with disabilities;
Facilitating and supporting capacity-building, including through the exchange and sharing of information, experiences, training programmes and best practices;
Facilitating cooperation in research and access to scientific and technical knowledge;
Providing, as appropriate, technical and economic assistance, including by facilitating access to and sharing of accessible and assistive technologies, and through the transfer of technologies.
2. The provisions of this article are without prejudice to the obligations of each State Party to fulfil its obligations under the present Convention.
Article 33 - National implementation and monitoring
1. States Parties, in accordance with their system of organization, shall designate one or more focal points within government for matters relating to the implementation of the present Convention, and shall give due consideration to the establishment or designation of a coordination mechanism within government to facilitate related action in different sectors and at different levels.
2. States Parties shall, in accordance with their legal and administrative systems, maintain, strengthen, designate or establish within the State Party, a framework, including one or more independent mechanisms, as appropriate, to promote, protect and monitor implementation of the present Convention. When designating or establishing such a mechanism, States Parties shall take into account the principles relating to the status and functioning of national institutions for protection and promotion of human rights.
3. Civil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process.
Article 34 - Committee on the Rights of Persons with Disabilities
1. There shall be established a Committee on the Rights of Persons with Disabilities (hereafter referred to as “the Committee”), which shall carry out the functions hereinafter provided.
2. The Committee shall consist, at the time of entry into force of the present Convention, of twelve experts. After an additional sixty ratifications or accessions to the Convention, the membership of the Committee shall increase by six members, attaining a maximum number of eighteen members.
3. The members of the Committee shall serve in their personal capacity and shall be of high moral standing and recognized competence and experience in the field covered by the present Convention. When nominating their candidates, States Parties are invited to give due consideration to the provision set out in article 4.3 of the present Convention.
4. The members of the Committee shall be elected by States Parties, consideration being given to equitable geographical distribution, representation of the different forms of civilization and of the principal legal systems, balanced gender representation and participation of experts with disabilities.
5. The members of the Committee shall be elected by secret ballot from a list of persons nominated by the States Parties from among their nationals at meetings of the Conference of States Parties. At those meetings, for which two thirds of States Parties shall constitute a quorum, the persons elected to the Committee shall be those who obtain the largest number of votes and an absolute majority of the votes of the representatives of States Parties present and voting.
6. The initial election shall be held no later than six months after the date of entry into force of the present Convention. At least four months before the date of each election, the Secretary-General of the United Nations shall address a letter to the States Parties inviting them to submit the nominations within two months. The Secretary-General shall subsequently prepare a list in alphabetical order of all persons thus nominated, indicating the State Parties which have nominated them, and shall submit it to the States Parties to the present Convention.
7. The members of the Committee shall be elected for a term of four years. They shall be eligible for re-election once. However, the term of six of the members elected at the first election shall expire at the end of two years; immediately after the first election, the names of these six members shall be chosen by lot by the chairperson of the meeting referred to in paragraph 5 of this article.
8. The election of the six additional members of the Committee shall be held on the occasion of regular elections, in accordance with the relevant provisions of this article.
9. If a member of the Committee dies or resigns or declares that for any other cause she or he can no longer perform her or his duties, the State Party which nominated the member shall appoint another expert possessing the qualifications and meeting the requirements set out in the relevant provisions of this article, to serve for the remainder of the term.
10. The Committee shall establish its own rules of procedure.
11. The Secretary-General of the United Nations shall provide the necessary staff and facilities for the effective performance of the functions of the Committee under the present Convention, and shall convene its initial meeting.
12. With the approval of the General Assembly, the members of the Committee established under the present Convention shall receive emoluments from United Nations resources on such terms and conditions as the Assembly may decide, having regard to the importance of the Committee’s responsibilities.
13. The members of the Committee shall be entitled to the facilities, privileges and immunities of experts on mission for the United Nations as laid down in the relevant sections of the Convention on the Privileges and Immunities of the United Nations.
Article 35 - Reports by States Parties
1. Each State Party shall submit to the Committee, through the Secretary-General of the United Nations, a comprehensive report on measures taken to give effect to its obligations under the present Convention and on the progress made in that regard, within two years after the entry into force of the present Convention for the State Party concerned.
2. Thereafter, States Parties shall submit subsequent reports at least every four years and further whenever the Committee so requests.
3. The Committee shall decide any guidelines applicable to the content of the reports.
4. A State Party which has submitted a comprehensive initial report to the Committee need not, in its subsequent reports, repeat information previously provided. When preparing reports to the Committee, States Parties are invited to consider doing so in an open and transparent process and to give due consideration to the provision set out in article 4.3 of the present Convention.
5. Reports may indicate factors and difficulties affecting the degree of fulfilment of obligations under the present Convention.
Article 36 - Consideration of reports
1. Each report shall be considered by the Committee, which shall make such suggestions and general recommendations on the report as it may consider appropriate and shall forward these to the State Party concerned. The State Party may respond with any information it chooses to the Committee. The Committee may request further information from States Parties relevant to the implementation of the present Convention.
2. If a State Party is significantly overdue in the submission of a report, the Committee may notify the State Party concerned of the need to examine the implementation of the present Convention in that State Party, on the basis of reliable information available to the Committee, if the relevant report is not submitted within three months following the notification. The Committee shall invite the State Party concerned to participate in such examination. Should the State Party respond by submitting the relevant report, the provisions of paragraph 1 of this article will apply.
3. The Secretary-General of the United Nations shall make available the reports to all States Parties.
4. States Parties shall make their reports widely available to the public in their own countries and facilitate access to the suggestions and general recommendations relating to these reports.
5. The Committee shall transmit, as it may consider appropriate, to the specialized agencies, funds and programmes of the United Nations, and other competent bodies, reports from States Parties in order to address a request or indication of a need for technical advice or assistance contained therein, along with the Committee’s observations and recommendations, if any, on these requests or indications.
Article 37 - Cooperation between States Parties and the Committee
1. Each State Party shall cooperate with the Committee and assist its members in the fulfilment of their mandate.
2. In its relationship with States Parties, the Committee shall give due consideration to ways and means of enhancing national capacities for the implementation of the present Convention, including through international cooperation.
Article 38 - Relationship of the Committee with other bodies
In order to foster the effective implementation of the present Convention and to encourage international cooperation in the field covered by the present Convention :
The specialized agencies and other United Nations organs shall be entitled to be represented at the consideration of the implementation of such provisions of the present Convention as fall within the scope of their mandate. The Committee may invite the specialized agencies and other competent bodies as it may consider appropriate to provide expert advice on the implementation of the Convention in areas falling within the scope of their respective mandates. The Committee may invite specialized agencies and other United Nations organs to submit reports on the implementation of the Convention in areas falling within the scope of their activities;
The Committee, as it discharges its mandate, shall consult, as appropriate, other relevant bodies instituted by international human rights treaties, with a view to ensuring the consistency of their respective reporting guidelines, suggestions and general recommendations, and avoiding duplication and overlap in the performance of their functions.
Article 39 - Report of the Committee
The Committee shall report every two years to the General Assembly and to the Economic and Social Council on its activities, and may make suggestions and general recommendations based on the examination of reports and information received from the States Parties. Such suggestions and general recommendations shall be included in the report of the Committee together with comments, if any, from States Parties.
Article 40 - Conference of States Parties
1. The States Parties shall meet regularly in a Conference of States Parties in order to consider any matter with regard to the implementation of the present Convention.
2. No later than six months after the entry into force of the present Convention, the Conference of the States Parties shall be convened by the Secretary-General of the United Nations. The subsequent meetings shall be convened by the Secretary-General of the United Nations biennially or upon the decision of the Conference of States Parties.
Article 41 - Depositary
The Secretary-General of the United Nations shall be the depositary of the present Convention.
Article 42 - Signature
The present Convention shall be open for signature by all States and by regional integration organizations at United Nations Headquarters in New York as of 30 March 2007.
Article 43 - Consent to be bound
The present Convention shall be subject to ratification by signatory States and to formal confirmation by signatory regional integration organizations. It shall be open for accession by any State or regional integration organization which has not signed the Convention.
Article 44 - Regional integration organizations
1. “Regional integration organization” shall mean an organization constituted by sovereign States of a given region, to which its member States have transferred competence in respect of matters governed by this Convention. Such organizations shall declare, in their instruments of formal confirmation or accession, the extent of their competence with respect to matters governed by this Convention. Subsequently, they shall inform the depositary of any substantial modification in the extent of their competence.
2. References to “States Parties” in the present Convention shall apply to such organizations within the limits of their competence.
3. For the purposes of article 45, paragraph 1, and article 47, paragraphs 2 and 3, any instrument deposited by a regional integration organization shall not be counted.
4. Regional integration organizations, in matters within their competence, may exercise their right to vote in the Conference of States Parties, with a number of votes equal to the number of their member States that are Parties to this Convention. Such an organization shall not exercise its right to vote if any of its member States exercises its right, and vice versa.
Article 45 - Entry into force
1. The present Convention shall enter into force on the thirtieth day after the deposit of the twentieth instrument of ratification or accession.
2. For each State or regional integration organization ratifying, formally confirming or acceding to the Convention after the deposit of the twentieth such instrument, the Convention shall enter into force on the thirtieth day after the deposit of its own such instrument.
Article 46 - Reservations
1. Reservations incompatible with the object and purpose of the present Convention shall not be permitted.
2. Reservations may be withdrawn at any time.
Article 47 - Amendments
1. Any State Party may propose an amendment to the present Convention and submit it to the Secretary-General of the United Nations. The Secretary-General shall communicate any proposed amendments to States Parties, with a request to be notified whether they favour a conference of States Parties for the purpose of considering and deciding upon the proposals. In the event that, within four months from the date of such communication, at least one third of the States Parties favour such a conference, the Secretary-General shall convene the conference under the auspices of the United Nations. Any amendment adopted by a majority of two thirds of the States Parties present and voting shall be submitted by the Secretary-General to the General Assembly for approval and thereafter to all States Parties for acceptance.
2. An amendment adopted and approved in accordance with paragraph 1 of this article shall enter into force on the thirtieth day after the number of instruments of acceptance deposited reaches two thirds of the number of States Parties at the date of adoption of the amendment. Thereafter, the amendment shall enter into force for any State Party on the thirtieth day following the deposit of its own instrument of acceptance. An amendment shall be binding only on those States Parties which have accepted it.
3. If so decided by the Conference of States Parties by consensus, an amendment adopted and approved in accordance with paragraph 1 of this article which relates exclusively to articles 34, 38, 39 and 40 shall enter into force for all States Parties on the thirtieth day after the number of instruments of acceptance deposited reaches two thirds of the number of States Parties at the date of adoption of the amendment.
Article 48 - Denunciation
A State Party may denounce the present Convention by written notification to the Secretary-General of the United Nations. The denunciation shall become effective one year after the date of receipt of the notification by the Secretary-General.
Article 49 - Accessible format
The text of the present Convention shall be made available in accessible formats.
Article 50 - Authentic texts
The Arabic, Chinese, English, French, Russian and Spanish texts of the present Convention shall be equally authentic.
In witness thereof the undersigned plenipotentiaries, being duly authorized thereto by their respective Governments, have signed the present Convention.
"Hebzucht is het verlangen naar meer dan men noodzakelijkerwijs nodig heeft. Het is één van de zeven hoofdzondes. Soms mondt hebzucht uit in een ziekelijke zucht naar meer, vaak ook ten koste van anderen. Toch is hebzucht één van de bases van het kapitalisme en daarom in de westerse wereld tot op zekere hoogte geaccepteerd."
Je geld of je leven
Je snapt het niet.. laat mij erdoor, ik moet erbij want ik ruik het grote geld, ja daar ga ik voor.
Want als het geld begint te stromen ben ik daar, waar jij alleen maar van kunt dromen.
Ik heb opties, aandelen en rente vastgezet. Zwoegend en gestrest ben ik weer even van Heer Armoe gered.
Ook al kost het me mijn gezondheid en mijn leven : als ik dood ben heb ik tenminste nog iets om weg te geven.
Kijk mij nu rijden in die snelle bak. Iedereen kan de boom in, ik zet ze weer een hak.
Zie die blikken van afgunst en jaloezie,want ik heb meer dan jij. Verbaasd kijkt hij mij aan. Hard voor gewerkt zeg ik dan, je houdt me gewoon niet bij.
Creditcards, Rolex en een cabrio voor mijn uiterlijk vertoon : ik laat ieder zien en ook dat ik ook nog in het mooiste huis hier woon.
Beursindex van 's ochtend vroeg tot 's avonds laat, de wallen onder mijn ogen, alles wat het voortdurende tellen van de winst verraadt.
En natuurlijk ben ik goed verzekerd ook, want stel je voor ! Polissen, dekkingen wil ik en van alles wat : ja ik weet het, ik zit op het juiste spoor.
Want ik ben rijk en word me allicht pas van het échte leven bewust, als de dood straks genadeloos mijn voorhoofd kust.
(c) Nick Haenen
"Mensen die onzeker zijn over hun eigen kunnen, hebben behoefte aan een uitpuilend loonzakje als geruststelling dat ze echt zo belangrijk zijn als ze zelf denken."
"Het leven is moeilijk en de mens deugt niet - maar het zou voor mij allemaal wat dragelijker zijn als men er tenminste niet voortdurend over zou liegen. Om je leven, kansen en gezondheid geruineerd te zien en te voelen is ellendig, maar het is mij liever dat dat gebeurt door welbewuste egoisten die dat voor hun eigen doelen doen en daar niet over liegen dan door een stel schijnheilige schoften, die uit gebrek aan ieder individueel menselijk talent ambtenaar zijn geworden en zelfs niet de moed hebben om voor hun menselijke drijfveren uit te komen, maar hun egoisme, hebzucht, domheid, kwaadwilligheid voortdurend tooien in en uitleven met de meest prachtige maar meest valse pretenties."
"Egoïsme, competitie of hebzucht lijken de voornaamste drijfveren. Ook is er doorgaans een te groot verschil tussen het privé-leven en het werk. Thuis spelen managers heerlijk met hun kinderen, op de zaak gaat het alleen nog over geld. Mensen wordt niet toegestaan zichzelf te zijn..." Hans Keuren in Het Financieele Dagblad.
Lindsay Huyghebaert en Kurt Deman Karaat.be, 01/04/2007 : info@karaat.be
Fibromyalgie is een ongeneeslijke ziekte die de spieren en de pezen aantast. Mensen met fibromyalgie hebben last van pijn, stijfheid en vermoeidheid in de spieren, pezen en banden rond de gewrichten. Veel patiënten lijden ook nog eens aan extreme vermoeidheid en slapeloosheid, die gepaard gaan met een gebrek aan energie en uithoudingsvermogen. Alledaagse handelingen zijn vaak een probleem. Vzw Fibroveerke probeert alle mensen met fibromyalgie en CVS te verenigen. De symptomen en behandelingen van fibromyalgie en CVS overlappen elkaar, daarom probeert de vzw een brug te bouwen tussen beide.
Veerle werkte 20 jaar fulltime als directiesecretaresse in een exportbedrijf. Tijdens haar middagpauzes voerde ze nog wat huishoudelijke taken uit. ’s Avonds stond dan weer volledig in het teken van haar gezin…
Veerle : “In mijn gezin was ik de drijvende kracht met een hardwerkende man en twee kinderen. Tot mijn lichaam mij als het ware verplichtte om te gaan rusten. Ik had last van helse pijnen en wou weten wat er met mijn lichaam aan de hand was. Ik voelde mij slechter en slechter. Ik kon nog nauwelijks stappen, zitten of liggen. Overal spierpijnen, hoofdpijn, duizeligheid, geen concentratie meer, geen geheugen, alle gewrichten ontstoken, mijn darmtransit viel stil, ... Ik sliep van ‘s morgens tot ‘s avonds. Het monster zat in mijn lijf !”
Zoals de meeste fibromyalgiepatiënten, werd ook Veerle van de ene dokter naar de andere gestuurd. De artsen stelden geen afwijkingen vast bij een bloed- en röntgenonderzoek. Na maanden volgde de diagnose: fibromyalgie.
Veerle : “Mijn systeem was compleet verzwakt door tegenslagen, rouw en stress. Ik gaf twee jaar palliatieve zorgen aan mijn mama terwijl ik fulltime ging werken. Overdag zat ik op het werk en ‘s nachts aan haar ziekbed. Ik was enig kind en mijn mama was dan ook mijn beste vriendin. Het was te veel voor mijn lichaam. Maar ik had voorheen nooit signalen gekregen om het iets rustiger aan te doen…”
Uit verschillende theorieën blijkt dat fibromyalgie kan ontstaan door emotionele trauma’s, door een virus of een auto-ongeval. Na de diagnose volgde er voor Veerle een periode van aanvaarding, voor elke patiënt een moeilijke stap.
Veerle : “Na de diagnose begint een zoektocht naar een eigen "balans" en dan moet je ook leren luisteren naar je lichaam. Eén uitstap betekent voor mij een terugval van enkele dagen met hevige pijn. Grote plannen maken of mijn aanwezigheid bevestigen kan niet. Gelukkig ben ik van nature een optimist. Ik wil ook niet ziek zijn en ik wil mijn gezin niets tekort doen. Het is verschrikkelijk moeilijk om pijn zomaar te aanvaarden als een dagelijks gegeven.”
In België is fibromyalgie geen erkende ziekte, dat betekent dat patiënten niet op financiële tussenkomst kunnen rekenen. Ook steun van het Vlaams Fonds is niet voor hen weggelegd. Door de te hoge kosten en het wegvallen van een inkomen raken heel wat mensen met fibromyalgie financieel en sociaal in een diepe put.
Veerle : “Sommige patiënten kunnen door geldgebrek de doktersbezoeken niet meer betalen en ze beginnen niet aan de voorgeschreven behandelingen omdat die te duur zijn. De leden van VZW Fibroveerke wisselen positieve tips en ervaringen uit over mogelijke hulpmiddelen. Zelf maak ik gebruik van een bereiding met kefir, dat een gunstig effect heeft op mijn darmtransit. De rest van de medicatie die ik neem is financieel een zware dobber. Er is nog een erg lange weg te gaan. ”
Kefir Kefir (melkkefir; afkomstig van het woord köpürmek = schuimen) is een dikvloeibare, koolzuurhoudende en licht alcoholische melkdrank, die oorspronkelijk afkomstig is uit de Kaukasus en Tibet. Het wordt gemaakt met een mengsel van verschillende melkzuurbacteriën en gisten. De lichtzure en frisse smaak lijkt op die van drinkyoghurt. Daarnaast bestaat er nog waterkefir, een drank, op basis van vergisting van in water opgeloste suiker. Voor het maken van kefir wordt aan koe-, geiten- of schapenmelk kefirkorrels toegevoegd, waardoor fermentatie van de melk optreedt. Ook kan de plantaardige sojamelk gebruikt worden. De optimale fermentatietemperatuur is 10°C tot 25°C. De fermentatie duurt 2-4 dagen, afhankelijk van de temperatuur en de sterkte van de bacteriecultures. Het alcoholgehalte kan afhankelijk van de fermentatieduur 0,2 tot 2 % bedragen. Het vet- en eiwitgehalte is afhankelijk van de gebruikte melk.
Kefirkorrels Van oudsher wordt kefir gemaakt met behulp van kefirkorrels (kefirknollen), die bestaan uit eiwitten, vetten en polysachariden en die door verschillende bacteriën geproduceerd worden. De gummiachtige korrels kunnen de grootte van een walnoot tot de grootte van een vuist hebben. Bij kamertemperatuur worden ze in ongeveer 14 dagen dubbel zo groot. Overgebleven kefirkorrels kunnen gedroogd of ingevroren bewaard worden, maar mogen vanwege de zuurheid niet met metaal in aanraking komen. De smaak van op deze wijze geproduceerde kefir varieert van seizoen tot seizoen, omdat de microflora zich aan de omgeving aanpast.
Veerle : “Op het secretariaat kan je terecht voor alle informatie op dinsdag en donderdag van 12u tot 15u. Alle leden zijn bij ons een persoon en geen nummer. Via een gesloten forum kunnen de leden met elkaar in contact komen. In het ledenboekje dat om de drie maanden verschijnt komen oproepjes, vragen en allerhande nuttige informatie.”
Veerle : “Ik richt mij vooral tot de politieke kringen, want 30.000 zieke kiezers en hun familie vragen om een einde te maken aan de hopeloze en schandalige manier waarop wij tot op heden in België worden behandeld. Wij vragen de (h)erkenning voor de ziekte in ons land. Verder willen we ook een tussenkomst in onze kosten, zoals bij alle andere ziektes. Niemand heeft gevraagd om ziek te worden en wij wensen daar dan ook niet de dupe van te worden !”
Meer info : www.fibroveerke.be of tel. : 056-70 32 45 (dinsdag en donderdag van 12 tot 15u).
Nocturie ’s Nachts evenveel plassen als overdag is niet normaal
HulpOrganisaties.be
‘s Nachts te vaak wakker om te plassen (nocturie), kan leiden tot oververmoeidheid, slaperigheid, een lagere levenskwaliteit, een lagere productiviteit overdag en in ernstige gevallen tot depressie. Dat blijkt uit Zweeds onderzoek.
Uitgeslapen wakker worden lukt niet iedereen. Bij meer dan de helft van de vrouwen en mannen boven de 50 jaar is ’s nachts één of meerdere keren opstaan om te plassen de meest voorkomende oorzaak van een verstoorde nachtrust, nocturie genoemd. De ernst van dit probleem verschilt van geval tot geval en is afhankelijk van het aantal keren dat je ’s nachts moet opstaan en hoe gemakkelijk of hoe moeilijk je daarna terug inslaapt. Nog te weinig mensen spreken hun arts hierover aan, omdat ze niet stilstaan bij de gevolgen ervan en de impact op hun leven.
’s Nachts evenveel plassen als overdag is niet normaal
Normaal produceren we 1 tot 2 liter urine per etmaal, waarvan slechts 25% tijdens de nacht. Overdag plast een volwassene gemiddeld vier tot zes keer. ’s Nachts zou je normaal moeten kunnen doorslapen zonder te urineren. Wie één of meerdere keren per nacht wakker wordt om te plassen en dit als belastend ervaart (verstoorde nachtrust en verminderde activiteit overdag) wordt aangeraden hierover te spreken met een arts.
Nocturie treft zowel mannen als vrouwen en naarmate ze ouder worden, hebben ze er meer last van. Het is een complexe medische aandoening die bij ongeveer 70% van de gevallen kan toegeschreven worden aan “nachtelijke polyurie”, de overproductie van urine tijdens de nacht, waardoor je ’s nachts bijna even vaak moet plassen als overdag.
Aangepaste eet- en drinkgewoontes kunnen helpen
Veel mensen die te maken hebben met nocturie zoeken geen hulp, omdat ze er ten onrechte van uitgaan dat het een natuurlijk gevolg is van ouder worden (overactieve blaas, vergrote prostaat…). De arts kan echter bepalen of er al dan niet een onderliggende ziekte aan de bron ligt en kan mits een aangepaste behandeling de ziekte en ook het probleem trachten op te lossen.
Wanneer er geen sprake is van een onderliggende ziekte, kunnen aangepaste eet- en drinkgewoontes al helpen :
- drink overdag voldoende drinken (1 tot 2 liter); drink voornamelijk in de voormiddag en de vroege namiddag. - beperk de vochtinname enkele uren voor het slapengaan. - eet ’s avonds niet te laat, want het verteringsproces stimuleert de urineproductie. - beperk alcohol- en cafeïnegebruik (koffie, thee) enkele uren voor het slapengaan.
Als aangepaste eet- en drinkgewoontes bij volwassenen die lijden aan nocturie niets veranderen aan het probleem, dan kan de arts beslissen om eventueel een medicamenteuze behandeling te starten en zo de overproductie van urine ’s nachts aan banden te leggen en ervoor te zorgen dat die persoon uitgeslapen kan opstaan.
Twee wetenschappers van de universiteit van Manchester hebben een speciale gel ontwikkeld, die kan worden geïnjecteerd bij mensen met lage rugpijn. Toepassing hiervan zou als alternatief voor operatief ingrijpen kunnen dienen. Het gaat om minuscule gel deeltjes, die na injectie in het beschadigde deel van de ruggengraat opzwellen en stijf worden. Onderzoek bij dieren heeft aangetoond dat door injectie met deze gel het bewegingsmechanisme werd hersteld. Deze ontwikkeling opent deuren voor toepassing bij mensen, denken de wetenschappers.
Steeds meer senioren beschikken over een mobiele telefoon, maar velen weten niet hoe ze deze precies moeten bedienen. Om de mogelijkheden van het mobieltje volledig te kunnen benutten, is er nu een handig en praktisch boek dat senioren de weg wijst. Ook de toestellen die speciaal voor senioren ontwikkeld worden, komen in 'Mobiele telefonie' voor senioren aan bod. Victor Peters legt met de bekende stap-voor-stapmethode uit hoe senioren de mogelijkheden van hun mobiele telefoon kunnen gebruiken : sms'jes lezen en versturen, veelgebruikte nummers opslaan in het adresboek, de klok- en wekkerfunctie instellen, de ringtone aanpassen, foto's maken en opslaan en nog veel meer. Kortom : een boek dat duidelijk in een grote behoefte voorziet. Victor Peters heeft al vele succesvolle computerboeken op zijn naam staan, zoals 'Alles wat n(i)et mag met computers' (1) en 'Lp's op cd zetten' (2).
Recensie (NBD|Biblion) : Alle benodigde informatie voor de late starter/senior of leek, die zich in de wereld van de mobiele telefonie (gaat) stort(en). Deze uitgave, uitgevoerd in duidelijk leesbare letter en een lay-out zonder franjes, biedt basiskennis op het gebied van o.a. de mobiele telefoon (SIM-kaart, beltegoed, prepaid, MMS etc.), de mogelijkheden van de mobiele telefoon (draadloos, geluid, beeld, internet, computer), veiligheid, aanschaf (abonnement of prepaid, welk netwerk, prijsvergelijking), speciale toestellen, het menu, instellingen, sms en de Secufone, een toestel speciaal ontwikkeld voor senioren. De beschrijving gebeurt aan de hand van een aantal populaire toestellen zoals Nokia en Siemens, maar de informatie is ook bruikbaar voor andere type toestellen. Het geheel is geillustreerd met veel zwart-witafbeeldingen. Met uitvoerige inhoudsopgave, geen register.
Victor G.B. Peters Uitgever AW Bruna, 2004 Met een voorwoord van Mr. Christiaan Alberdingk Thijn, advocaat van KaZaA
Cd’s kopiëren, dvd’s rippen, muziek downloaden, serienummers zoeken, wachtwoorden kraken. Er kan van alles met uw computer. In dit boek leest u hoe het werkt. Met een cd- of dvd-brander en een goede internetaansluiting bent u al een aardig eind op weg om de mazen van de wet op te zoeken. Met de meegeleverde hulpprogramma’s op de cd-rom en met dit boek onderzoekt u het schemergebied nog wat uitgebreider. Omdat de techniek de wet meestal een paar stappen vooruit is, kan er altijd meer dan er mag. In dit boek leert u hoe ver u kúnt gaan, bijvoorbeeld met het achterhalen van registratiecodes en wachtwoorden en vertellen we erbij hoever u mag gaan.
Wilt u oog houden op wat uw kinderen op internet uitspoken ? Leer hoe u een oogje in het zeil houdt. Als u het maar niet gebruikt om uw collega’s te controleren. Op de cd-rom vindt u onder meer het programma Shareaza waarmee u muziek, films en software kunt uitwisselen. U ziet dat het kan en of het allemaal mag, daar is het laatste woord nog niet over gezegd.
Tevens besteden we in dit boek aandacht aan uw eigen veiligheid. Met alle technische ontwikkelingen is uw privacy kwetsbaar geworden en zeker wanneer u de uithoeken van internet gaat bezoeken, kan een beetje bescherming zeker geen kwaad. U leert hoe u zo weinig mogelijk sporen achterlaat op websites, hoe uw e-mailadres niet achterhaald kan worden en hoe u zelf niet het slachtoffer wordt van spionnen en spammers.
Alles wat n(i)et mag is een boek over : - spionnen en spammers - wachtwoorden en registratiecodes - software en muziek - kopiëren en uitwisselen - kraken en controleren - beveiliging en privacy
Inclusief cd-rom boordevol hulpprogramma’s. Hoewel de meeste programma’s op de cd-rom werken op alle Windows besturingssystemen is dit boek primair geschreven voor Windows XP-gebruikers.
2. - LP's op cd zetten Inclusief software programma Lp2Cd Victor G.B. Peters AW Bruna, 2005
Al uw vinyl digitaal. Ook geschikt voor cassettebandjes.
Dit boek is de perfecte handleiding om uw verzameling platen duurzaam te bewaren om ze - zonder slijtage- weer keer op keer te kunnen afspelen. Met de software bij dit boek kunt u bovendien de geluidskwaliteit nog wat verbeteren door de ruis- en tikfilters te gebruiken.
Stap voor stap door het gehele proces : - het aansluiten van de platenspeler op de computer - het opnemen van de muziek - het opslaan, indelen en oppoetsen van het originele geluid - het branden van de oude nummers op een nieuwe cd. - het maken of vinden van een nieuw cd-hoesje.
Op de cd-rom bij dit boek vindt u het programma Lp2Cd, waarmee u in enkele eenvoudige stappen de muziek van uw lp's geschikt maakt om op cd te branden. Boek en programma zijn ook geschikt om uw cassettebandje om te zetten naar cd.
Systeemeisen : - PC - CD-rom speler - Geluidskaart - Windows 98 of hoge
Woodlands Healing Research Center, Family, Environmental & Preventive Medicine, 5724 Clymer Rd. Quakertown, PA 18951 Email : foffice@woodmed.com - Web Page : http://www.woodmed.com 01/14/2007
About 75% of patients fit the diagnosis for both Chronic Fatigue Syndrome (CFS) and Fibromyalgia Syndrome (FMS). Chronic Fatigue Syndrome is also known as Myalgic Encephalopathy and we will use the abbreviation CFS/ME to reflect the name interchange. The cause of CFS/ME and FMS is unknown their course is chronic and require long term management. Both disorders can be diagnosed by a physician only on the basis of symptoms reported by the patient and cannot be confirmed by a single laboratory tests or other objective measures. These disorders are heterogeneous, meaning that they can present differently in different people and consequently, no one single approach is likely to help all with these conditions. The two disorders share most of the same symptoms and have similar treatments. The differences are primarily the following :
Fatigue is the dominant symptom in CFS/ME. It is severe and not relieved by rest or sleep and not the result of excessive work or exercise. Of note, researchers at DePaul University have found that CFS patients experience different kinds of fatigue which can be expressed as "molasses fatigue, wired fatigue, brain fog fatigue, post-exertional fatigue and flu fatigue" compared to healthy individuals who experience only "flu fatigue" during an acute illness (Porter, N. IACFS 2007)
Widespread pain with tender points is the primary symptom in Fibromyalgia (some patients with CFS exhibit similar tender pressure points; however, muscle pain is less prominent in patients with CFS).
Although the clinical symptoms and treatment approach is similar in both of these conditions, there is some preliminary genetic evidence that the two disorders may be distinct, which offers the possibility for treatments that are specific to each (Garcia-Fructuoso FJ. IACFS 2007)
What is chronic fatigue syndrome/Myalgic Encephalopathy ?
Chronic fatigue syndrome (CRS), also sometimes called Myalgic Encephalomyelitis (ME) in Europe, does not appear to be new. In the 19th century the term neurasthenia or nervous exhaustion, was applied to symptoms resembling CFS. In the 1930s through the 1950s outbreaks of disease marked by prolonged fatigue were reported in the United States and many other countries. Beginning in the early to mid-1980s interest in chronic fatigue syndrome was revived by reports in America and other countries of various outbreaks of long-term debilitating fatigue.
CFS is characterized by unexplained chronic fatigue that lasts for more than six months, impairs normal activities and has no identifiable medical or psychological problems to account for it. The condition is not considered to be chronic fatigue syndrome, however, unless it meets certain criteria. If doesn't then the condition is referred to as idiopathic chronic fatigue; idiopathic simply means that the cause is not known. It should be noted that six million patient visits are made each year because of fatigue, although only a very small percentage of these can be attributed to chronic fatigue syndrome.
CDC (Research) criteria for chronic fatigue syndrome
The fatigue must be severe : sleep or rest does not relieve it; the fatigue is not the result of excessive work or exercise; the fatigue substantially impairs a person's ability to function normally at home, at work, and in social occasions; even mild exercise often makes the symptoms, especially fatigue, much worse.
The fatigue must be a new, not lifelong, condition with a definite time of onset. For instance, many patients with chronic fatigue report having had a flu-like illness that triggered the symptoms (in one study, 20% reported chronic fatigue following a flu). Often, the condition first appears as a viral upper respiratory tract infection marked by some combination of fever, headache, muscle aches, sore throat, earache, congestion, runny nose, cough, diarrhea and fatigue. Typically, the initial illness is no more severe than any cold or flu.
In addition to severe persistent fatigue, four or more of the following symptoms must have been present for longer than six months : - short-term memory loss or a severe inability to concentrate that affects work, school or other normal activities, - sore throat (chronic and recurrent) - swollen lymph nodes in the neck or armpits (chronic and recurrent) - muscle pain - pain without redness or swelling in a number of joints - intense or changing patterns of headaches - unrefreshing sleep - after any exertion, exhaustion that lasts for more than a day.
The symptoms must persist. In ordinary infections, symptoms go away after a few days, but in CFS, fatigue and other symptoms recur or continue for months to years. Many patients experience symptoms as recurring bouts of flu-like illness, with each attack lasting from hours to weeks.
Pediatric case definition for childhood chronic fatigue syndrome (CCFS) (Jason L.A, Bell, D, Rowe K. et al. - IACFS Pediatric Case Definition Working Group – 2007)
Unexplained persistent or relapsing activity limiting fatigue lasting 3 months or longer. It is not the result of ongoing exertion; not alleviated by rest and results in substantial reduction in previous levels of educational, social and personal activities.
Concurrent occurrence of the following classic CFS/ME symptoms : - Post-exertional exhaustion/malaise - Unrefreshed sleep or disturbed sleep
Pain or discomfort that is widespread or migratory in nature (At least one of the following) : - Myofacial and/or joint pain - Abdominal and/or head pain
Neuro-cognitive symptoms (two or more) : - Memory impairment - Difficulty focusing - Difficulty in finding the right word - Frequent forgetting of what is wanted to say - Absent mindedness - Slowness of thought - Difficulty in recalling information - Need to focus on one thing at a time - Trouble expressing thought - Difficulty comprehending information - Frequently lose train of thought - New trouble with math or other educational subjects
At least one symptom from two of the following three categories : - Autonomic manifestations : Neurally mediate hypotension, postural orthostatic tachycardia, delayed postural hypotension, palpitations with or without cardiac arrhythmias, dizziness, feeling unsteady on the feet—disturbed balance, shortness of breath - Neuroendocrine manifestations : Recurrent feelings of feverish and cold extremities, subnormal body temperature and marked diurnal fluctuations, sweating episodes, intolerance of extremes of heat and cold, marked weight change-loss of appetite or abnormal appetite, worsening of symptoms with stress - Immune manifestations : Recurrent flu-like symptoms, non-exudative sore or scratchy throat, repeated fevers and sweats, lymph nodes tender to palpation--generally minimal swelling noted, new sensitivities to food, odors or chemicals.
What is fibromyalgia syndrome ?
Fibromyalgia (also called 'fibrositis' or 'fibromyositis') is a syndrome of unknown causes that results in chronic, sometimes debilitating wide spread pain (it hurts everywhere) and fatigue.
Pain The primary symptom of fibromyalgia is pain, the pain is widespread and in certain precise locations called tender points. The pain of fibromyalgia is often is described as follows : - The experience of widespread pain is similar to that of arthritis and has been described as stiffness, burning, radiating and aching. Most patients report feeling some pain all the time and many describe it as "exhausting." The pain can vary, depending on the time of day, weather changes, physical activity and the presence of stressful situations. The pain is often more intense after disturbed sleep. - Tender point pain occurs in local sites (tender points), usually in the neck and shoulders and then radiates out. It occurs specifically in areas where the muscles attach to bone or ligaments. There are no lumps or nodes associated with these points and no signs of inflammation (swelling, redness, heat). There are at least 11 of 18 specific areas called tender points on the body. The pain experienced when pressing on a tender point is very localized and intensely painful (not just tender). Tender points are found in the following areas :
The tender point definition of FMS was developed back in 1990 when much less was known about this disorder. Based on what we now know, tender point definition is an over-simplification of this condition which is best describes as a wide spread pain syndrome (it hurts everywhere), not discrete isolated tender points.
Fatigue and sleep disturbances Another major complaint is fatigue, which some patients report as being more debilitating than the pain. Sleep disturbances, particularly restless leg syndrome, are also very common. Fatigue and sleep disturbances are, in fact, almost universal in patients with Fibromyalgia and if these symptoms are not present, then some experts believe that physicians should seek a diagnosis other than Fibromyalgia.
Other FMS symptoms Other symptoms that occur more often than average in Fibromyalgia patients are the following:
Up to a third of patients experience depression, and disturbances in mood and concentration are very common.
Dizziness.
Headaches.
Tingling or numbness in the hands and feet.
Gastrointestinal problems, including irritable bowel syndrome with gas and alternating diarrhea and constipation.
FMS symptoms in children Although symptoms are similar in children, some experts suggest that they often have no set number of pain tender points. In one study, children had an average of 9.7 tender point locations compared to the minimum of 11 in adults. In general, children with fibromyalgia most often experience sleep disorders and diffuse pain and less frequently headache, general fatigue, and morning stiffness.
Who gets chronic fatigue syndrome & fibromyalgia ?
CFS/ME In studies of large patient groups, 25% of people complain of fatigue and 4% have a fatiguing illness lasting greater than 6 months and of these only a small number meet CDC criteria for CFS. The CDC performed a national survey in 2004 which revealed that 1-2% of the general population meets criteria for CFS but they were not examined to rule out other causes. All age groups had CFS but adults were most common and women were greater than men by 2-5 times. Minorities were at increase risk along with those in lower socio-economic groups. Of those people who meet criteria for CFS, 16% also meet criteria for FMS and 41% meet criteria for Multiple Chemical Sensitivity Syndrome.
FMS Studies report that 4% of the general population meet the diagnostic criteria for fibromyalgia (Wolfe, et al, 1990). Some evidence suggests that a number of factors may predispose people to fibromyalgia, including being female, having had difficult experiences in childhood, having a psychological vulnerability to stress and coming from a very stressful culture or environment. - Gender - The prevalence of fibromyalgia is higher in women (3.4%) than in men (0.5%). Women's symptoms are also more severe than men's are. · Age - The disorder usually occurs in people between 20 to 60 years of age and peaks at age 35. In one study, however, fibromyalgia increased with age and had a prevalence of over 7% in patients between 60 and 79 years of age. A condition called juvenile primary fibromyalgia, which appears in children, is uncommon, but studies indicate that its incidence is increasing. One study found that 1.2% of school children, all girls, met the criteria for fibromyalgia. Other studies have found an even higher prevalence of fibromyalgia in children. A 2000 study reported that in one specialty center it typically developed in children after age 13 and was most commonly diagnosed at 15. Symptoms were similar but outcome appears to be better in young people than adults. - Family Factors - Studies report a higher incidence of fibromyalgia among family members. It is not clear if genetic or psychological factors or both are involved. Some studies reporting some relationship are as follows : ° - One reported that 28% of the children of mothers with fibromyalgia also develop the disorder. There were no differences in psychological disorders between offspring who developed fibromyalgia and those who did not, however. ° - Another study noted that 66% of parents of children with fibromyalgia reported some sort of chronic pain and about 10% had fibromyalgia itself. Close-knit families, oddly enough, were more likely to be associated with severe cases of childhood fibromyalgia.
What causes these disorders ?
Chronic fatigue syndrome/Myalgic Encephalopathy Theories abound about the causes of chronic fatigue syndrome. Unfortunately, many physicians still doubt that CFS is an actual disease but believe that it is a component of a psychological disorder or a symptom of other problems, similar to anemia and high blood pressure. Indeed, no primary cause has been found that explains all cases of CFS, but a number of experts believe that the chief possible causes of CFS include : - Infectious agents (viral, bacterial, other germs) - Immune system defects - Hypothalamic-Pituitary-Adrenal (HPA) Axis Dysfunction - Orthostatic Hypotension - Environmental Chemicals- pesticides, solvents, heavy metals.
Other factors may include genetic factors and brain abnormalities. Still, although many of these elements appear to be at work in most cases of CFS, it is not clear what sequence of events actually leads to the fatigue and other prominent symptoms of this disorder. And these elements may produce similar symptoms across all individuals but not produce consistent biologic factors that would allow objective testing. Personality and psychological factors do not appear to be a direct cause of CFS but may increase a person's susceptibility to the syndrome after exposure to mental or physical stresses, such as viral infections.
Many experts believe that FMS is not a disease but rather a dysfunctional disorder which is "set" by the genes we are born with but then modified or exacerbated by our environmental influences or stressors. The "Stressors" capable of triggering FMS include (Clauw D. Neuroimmunomodulation 1997) : - Peripheral Pain Syndromes - Infections (EBV, Parvovirus, Lyme Disease, Q fever) - Physical trauma (automobile accidents) - Psychological stress/distress - Hormonal alterations (hypothyroidism) - Drugs - Vaccines - Certain catastrophic events (war, but not natural disasters)
In our opinion, the underlying cause of these conditions is long-term unremitting stress (we will look at the long list of stressors in more detail later). Where such stress has reduced the vitality of the body it can often only take one or two more severe stress incidents to throw the individual into the full-blown Chronic Fatigue state. While this last stress is the one that usually gets blamed for the condition, it is only the “straw that broke the camel’s back.”
Each of us has our own breaking point dependent upon the vitality of our endocrine (adrenal) glands and immune system. Some individuals have inherited such a weak immune system that they will suffer from this condition no matter what measures they take to prevent it (even these can be helped, however). On the other hand, there are still a few left whose systems are so strong that they will never develop this condition no matter what may come along. The great majority of us lie somewhere between these two extremes.
In our opinion, the reason that this CFS/FMS is now the fastest growing epidemic in our nation can be laid at the feet of the modern dictum, “Better Living through Chemistry.” The traditional stresses of physical strain, emotional strife, bacterial and viral invaders, trauma, natural poisons etc. have been with us since the earliest days of mankind and yet we have few verified cases of Chronic Fatigue during these years. What has changed in our lives today is the explosion of man made toxic chemical substances for which the body has had no time to create the needed internal antidotes. A list of these assaulting agents would have to include but are not limited to pesticides, water pollution, air pollution, almost all modern medical drugs including the overuse and abuse of antibiotics, multiple vaccinations and food additives. As each new generation has its collective immune systems assaulted by an increasing number of these “unnatural” substances our children are born with ever-weaker immune systems and so the predisposition to this condition grows exponentially with each new generation.
Causes of secondary fibromyalgia Secondary Fibromyalgia is a condition with fibromyalgia symptoms that are caused by specific disorders : - Physical injury - In one study, for example, secondary Fibromyalgia developed in over 20% of patients who had neck injuries. The symptoms are identical to those of primary Fibromyalgia but are harder to treat. Once study reported a high incidence of Fibromyalgia in workers complaining of repetitive stress injuries, although it is not clear which condition caused the other. - Ankylosing spondylitis - Surgery - Lyme disease - According to one study between 10% and 25% of patients with Lyme disease subsequently developed Fibromyalgia, which did not respond to standard Lyme treatment using antibiotics. - Hepatitis C.
Body area and organ dysfunctions found in CFS/FMS
Central nervous system (brain) Brain dysfunction appears to be a key abnormality for understanding the features of CFS/FMS. Although IQ does not appear to be affected, cognitive impairment (problems with thinking, memory and attention) has been documented by psychometric testing in both CFS and FMS patients. These include deficiencies in complex information processing (dealing with multiple tasks at the same time), information processing speed, initial acquisition of new information and learning/recalling complex verbal material. It has been shown that these cognitive deficiencies are not the result of depression or other mental health disorders (Tiersky LA, et al. J Clin Exp Neuropsychol 1997). An analysis on reaction times between CFS patients and healthy controls revealed slowed reaction times that worsened and stay worse after exercise (Snell C. IACFS 2007).
There are several non-specific abnormalities in the central nervous system, including pinpoint spots of brain inflammation found on MRI (Lange, et al. JNS, 17:3, 1999), decreased regional blood flow to the brain by SPECT and SPET scans, specifically in the temporal lobes, cingulate cortex and frontal lobes (Abu-Judeh 1998, Kuratsune 2002, Garcia A. AICFS 2007), hypometabolism by PET scan and abnormalities in spinal fluid ( Natelson, BH. Abstract, AACFS, 2003). Furthermore, brain blood flow was demonstrated to be decreased in CFS whether they had depression or not (Yoshiuchi K, Nateson BH, AACFS, Oct 2004). Brain SPET uptake worsened after performing a physical-mental stress test (Garcia-Quintana A. IACFS 2007).
On dynamic neruoimaging studies, CFS patients perform as accurately as healthy controls but their brain activation patterns are different and there is a clear deficit on speed of brain processing (Lange, IACFS 2007). CFS patients demonstrate longer information processing times after controlling for variables (including depression) that confound the interpretation of information processing speed. Simply put, CFS patients have to work harder to do simple tasks and this is not explained by depression (Togo, F. IACFS 2007).
Research has reported that some patients with CFS have high levels of serotonin, a neurotransmitter (chemical messenger in the brain); such elevated levels in the brain are associated with fatigue. However, another study revealed low levels of serotonin transporters in the part of the brain (the anterior cingulated cortex) of CFS patients which is very different from the areas involved in depression (Kuratsune H, AACFS, Oct 2004). Other studies have revealed reduced serotonin neurotransmitter system across brain, specifically the hippocampus (Cleare 2005) and anterior cingulate.
Some critics of CFS feel that this condition is just a form of primary depression or anxiety. However, CFS patients were found to have elevated lactate in the ventricles and low N-acetyl-aspartate in the hippocampus of their brains compared to healthy individuals and patients with the diagnosis of generalized anxiety disorder (GAD). The elevated lactate suggests oxidative stress and mitochondrial dysfunction are playing a role brain abnormalities in CFS. These findings support that there is biochemical differences in the brains of individuals with "pure" CFS when compared to healthy individuals and those with generalized anxiety disorder (Nestadt, P. IACFS 2007).
Autonomic nervous system (ANS) dysfunction Vagus Nerve Dysfunction: One study found that after CFS patients exercise, they exhibit slight abnormalities in the activity of the vagus nerves on the heart; the vagus nerves run down each side of the neck and end at the intestines and affect many bodily functions.
Postural Orthostatic Tachycardia Syndrome (POTS) is the most common form of autonomic imbalance in CFS and occurs frequently in young people with CFS.
Neurally Mediated Hypotension (NMH) : Some studies have suggested that a subgroup of patients who fit the strict criteria for chronic fatigue syndrome may have a condition known as neurally mediated hypotension (NMH). This is confirmed with a tilt table test. NMH causes a dramatic drop in blood pressure when standing up, even for as short a time as ten minutes. It is the result of an abnormality in the central nervous system that signals the heart to slow down and lower blood pressure when a person stands up; blood pools in the feet and legs before circulating back up to the heart, sometimes causing light-headedness, nausea and fainting. One 1999 study suggested that such patients tend to be younger and to recover from CFS sooner than patients whose symptoms are not due to NMH. Some experts believe that in these cases, a virus or infection may cause injury to the central nervous system that results in the hypotension abnormality. This could help explain why so many patients report a viral infection before developing chronic fatigue syndrome. Major studies need to be done and the results repeated with larger patient groups before they can be applied to the majority of CFS patients.
Low blood volume Some (a subset) of patients with CFS have low blood volume (low blood cell mass) that adds to the orthostatic intolerance described above. A well designed placebo controlled, double-blinded study was performed at the University of Miami examining the role of an injectable drug, Epoetin Alpha in CFS patients with documented low blood volume. This injectable treatment relieved the symptoms of dizziness and the suspectibility to orthostatic syncope but it did not improve the fatigue severity in these patients (Hurwitz B. Miami Epoetin Alpha Clinical Trial, IACFS 2007).
Chronic sleep disturbance Although there is not one specific sleep disturbance that is purely defining of CFS or FMS, both CFS and FMS patients have non-restorative sleep, which means that they do not have normal deep sleep. Other abnormalities include difficulty in initiating and maintaining sleep (DIMS), apnea, periodic limb movement of sleep (PLMS), nocturnal myoclonus (NM), vivid nightmarish dreams, "tired but wired", phase shifting and dysania (Lapp, C. IACFS 2007). Scientific studies have reveal sleep abnormalities 88-95% of CFS patients (Reeves, BMC neurol 2006, Fossey M. J Behavo Med 2004; May KP, Am J MEd 2004, Drupp L, J Psychsom Res 1993). OSA was the most common sleep disturbance found in these studies. Poor sleep quality was found in CFS patients (but not in healthy controls) and was associated with weakness in the parasympathetic nervous system during sleep (Tajima, S. IACFS 2007).
FMS patients have been shown to have decreased amount of the deep stages of sleep (stage III and IV) and increased incidence of sleep apnea, restless legs syndrome, periodic limb movement disorder (PLMD) which is a form of restless legs syndrome during sleep and bruxism (jaw clenching and teeth grinding) (Shaver, J. IACFS 2007).
Upper Airway Resistance Syndrome- UARS is chracterized by erratic breathing but not meeting criteria for Obstructive Sleep Apnea (OSA), oxygenation drops, frequent arousals and is associated with daytime fatigue, headaches, Irritable Bowel Syndrome and low BP (Lario BA Am J Med 1996; Sergi Eur Resp J 1999). This syndrome may be involved in FMS as of 28 subjects with FM, 26 were found to have UARS by a sleep study and CPAP treatment resulted in 40% improvement in their daytime symptoms (Gold AR Sleep 2004). UARS is more common in women.
Some experts believe that fibromyalgia does not cause disturbed sleeping patterns, but that sleep disturbances may be the precipitating factor for many cases of fibromyalgia pain. In one study, non-fibromyalgia volunteers reported fibromyalgia-like pain after they had been subjected to disrupted deep sleep. Disturbed sleep appears to trigger factors in the immune system that cause inflammation, pain, fatigue and decreased pain threshold.
Abnormal pain perception Some studies have suggested that the lowered pain thresholds experienced by fibromyalgia patients may represent a central defect in the way fibromyalgia patients process pain. Brain scans of fibromyalgia patients have, in fact, suggested abnormalities in pain processing centers (Gracely, R. et al. fMRI analysis in fibromyalgia and chronic fatigue syndrome. Abstracts, AACFS, 2003). Of particular interest is research that has detected up to three times the normal level of substance P (a neurotransmitter associated with increased pain perception) in the cerebrospinal fluid of fibromyalgia patients. Such abnormalities along with other factors (such as chronic sleep deprivation or physical injury) may produce a state called generalized hyper vigilance, which is an amplification of sensation. People with this condition are oversensitive to external stimulation and are preoccupied with the sensation of pain.
For example one study compared three groups of individuals : fibromyalgia patients, rheumatoid arthritis patients and people without these disorders. They were given a questionnaire to assess their response to pain and noise. Of the three groups, the fibromyalgia patients were least tolerant and most attentive to such stimuli.
Hormonal abnormalities & the hypothalamic-pituitary-adrenal (HPA) axis Adrenal Stress Hormones - Strong adrenal glands are key to optimum energy. The adrenal glands regulate the body's minerals as well as work with the thyroid gland to produce and maintain energy levels. We are exposed daily to many different kinds of stress including emotional, physical, environmental and work-related stress. Dietary factors such as refined and over-processed foods, preservatives and pesticides are also stressors. These stresses make the adrenals over respond by producing extra amounts of hormones for energy. However, long periods of stress cause the adrenals to work overtime, eventually robbing the body’s reserve of energy and nutrients – which can create adrenal fatigue and chronic tiredness. Of particular interest to researchers are possible abnormalities in the brain system known as the hypothalamus-pituitary-adrenal axis (HPA), which controls important functions, including sleep, response to stress and depression. - A number of studies on CFS patients have observed deficiencies in cortisol levels, a stress hormone produced in the hypothalamus (Cleare AJ, et al. Constrasting neuroendocrine responses in depression and chronic fatigue syndrome. Journal of Affective Disorders. 1995; 35: 283-289). Cortisol is a powerful suppressor of the immune system. One central hypothesis for CFS suggests that after a person with cortisol deficiency (hypoadrenalism) is exposed to a viral infection or some other physical or emotional stress, the immune system over responds and causes symptoms typical of chronic fatigue syndrome/FMS. - Riccardo Baschetti, M.D., states “Chronic Fatigue Syndrome (CFS) shares 39 features with primary adrenal insufficiency, including all the physical and neuropsychological symptoms listed in both the original and the revised criteria for CFS, as well as many other abnormalities.” Dr. Baschetti concludes : “I believe that adrenal insufficiency, rather than alteration in cardiac function, may primarily account for the reduction in exercise capacity in CFS.” (Riccardo Baschetti, M.D. Editor’s Correpsondence regarding: De Becker P, Roeykens J, Reynders M, Mc Gregor N, De Meirleir K. Exercise capacity in chronic fatigue syndrome. Arch Intern Med. 2000;160:3270-3277) - DHEA response to stimulation - One study investigated the response of the adrenal glands in 22 patients with CFS and 14 healthy controls. In both groups, they measured DHEA in serum after ACTH stimulation during 60 minutes. Although the researchers found normal basal (pre-stimulation) DHEA levels, they noted a ‘blunted’ serum DHEA response curve to the ACTH injection. This observation adds to the large amount of evidence of endocrinological abnormalities in CFS. (De Becker et al, Horm Metab Res 1999 Jan;31 (1):18-21) - Small Adrenal Glands in CFS - The first study to use imaging methods to measure adrenal gland size in CFS revealed significant adrenal atrophy in a group of 8 CFS patients with abnormal endocrine parameters. The right and left adrenal gland bodies were reduced by over 50% in the CFS subjects compared to those from a group of 55 healthy subjects (Scott et al, Psychoneuroendocrinology 1999 Oct;24 (7):759-68). - Abnormalities in the hypothalamus-pituitary-adrenal gland (HPA) axis have also been reported in fibromyalgia patients. Studies have revealed an impaired ability to activate the hypothalamic-pituitary portion of the hypothalamic-pituitary-adrenal axis as well as the sympathoadrenal system, leading to reduced ACTH and epinephrine responses to hypoglycemia (Adler GK et al, "Reduced Hypothalamic-Pituitary and Sympathoadrenal Responses to Hypoglycemia in Women With Fibromyalgia Syndrome," Am J Med, May, 1999;106:534-543.)
Low growth hormone levels A third of FMS patients have low insulin growth factor (IGF) levels. Low levels of growth hormone have been associated with impaired mental functioning, lack of energy, muscle weakness and intolerance to cold. See the medical therapy section for more information on growth hormone therapy in FMS/CFS.
Female menses Dr. Rowe reported in a small study that severe dysmenorrhea (painful menses) was more common in young women with CFS/ME and additionally, their CFS symptoms were worse during the time of their menses (Rowe K. IACFS 2007). Female hormone levels (estrogen, progesterone, testosterone) did not correlate directly with pain severity in 74 FMS women when compared to women without FMS (Okifuji 2006).
Infections
In up to 80% of cases, chronic fatigue syndrome starts suddenly with a flu-like condition. Because most of the features of CFS resemble those of a lingering viral illness, many researchers have focused on the possibility that a virus or some other infectious agent causes the syndrome. Most cases of CFS occur sporadically, cropping up individually without appearing to be contagious and there is no evidence that CFS is spread through casual contact, such as shaking hands or coughing or by intimate sexual contact. It is likely that a subset of CFS/FMS patients have infection as a major reason for their illness, especially those with significant neuro-cognitive (brain) symptoms (Peterson, D. Abstract, AACFS, 2003).
Although over 30 infectious germs have been suggested to cause CFS over the years, no single germ agent have been proven to cause CFS including Lyme disease, candida ("yeast infection"), herpesvirus type 6 (HHV-6), human T cell lymphotropic virus (HTLVs), Epstein-Barr, measles, coxsackie B, cytomegalovirus or parvovirus. Specifically, most studies (9 of them) suggest HHV6 as the most common infectious trigger to this disorder, but other studies (2) have failed to confirm this. Some researchers are suggesting that changes in normally harmless bacteria found in the intestine may play a role in the development of CFS symptoms. Another theory referred to as "hit and run" suggests that chronic fatigue syndrome might be the result of a virus or bacteria that infects the body, causes immune abnormalities and is then eliminated. It leaves behind a damaged imbalanced and dysregulated immune system, however, that continues to cause flu-like symptoms even in the absence of the virus (this is called Th2 activation). Other theories pose that immune system or neurologic abnormalities cause a reactivation of a viral or bacterial infection that had presumably resolved but had persisted in a latent (inactive) stage.
So far, there has been no study proving that CFS is “contagious.” However, one small pilot study suggests the possibility that an infectious agent which can cause CFS may persist in at least some CFS patients and can given to another individual, especially those living closely with the CFS patient (Underhill, O’Gorman, AACFS, Oct 2004).
Viral infections There have been 20 or more viruses somehow associated with CFS. Of these, two viruses seem to be the most prominent in recent studies : Human Herpes Virus 6 (HHV-6) and Epstein Barr Virus (EBV) (IACFS 2007). Other viruses linked to CFS include Parvovirus B19, enteroviruses (Coxackie B like viruses), Ross River virus, Coxiella burnetti (Q fever virus). In one small sample of 20 CFS patients, 9 (45%) were found positive to either EBV or HHV-6 compared to 12 healthy controls (Levine S. IACFS 2007). More information about HHV-6 can be found at the HHV-6 Foundation : www.hhv-6foundation.org -.
A common symptom found in many CFS patients is chronic stomach pain. Dr. Chia found evidence that 80% of 108 CFS patients had an enterovirus infection of their stomach proven by endoscopic biopsy (Chia J. IACFS 2007).
Mycoplasma infections Dr. Nicolson and co-workers have been interested in the potential role that chronic infections may play in FMS/CFS. Although the causes of chronic illnesses are for the most part unknown, the complex signs and symptoms that evolve in many FMS, CFS, Gulf War Illness (GWI) patients may be due, in part, to systemic chronic infections (bacteria, viruses, fungi). Such infections can follow acute or chronic chemical, environmental or other insults (trauma, acute viral illness etc.) that have the potential to suppress the immune system and cause metabolic imbalances (Nicolson, G.L., et al. Mycoplasmal infections in chronic illnesses : Fibromyalgia and Chronic Fatigue Syndromes, Gulf War Illness, HIV-AIDS and Rheumatoid Arthritis. Med. Sentinel 1999; 4: 172-176 and Nicolson, N.L. Chronic fatigue illness and Operation Desert Storm. J. Occup. Environ. Med. 1996; 38: 14-16).
Dr. Nicolson previously found that more than 60% of patients with Chronic Fatigue Syndrome/ Fibromyalgia Syndrome had mycoplasma blood infections, such as M. fermentans. In a more recent study, patients with chronic Fatigue Syndrome/Fibromyalgia syndrome were examined for multiple mycoplasmal infections in their blood. A total of 91 patients diagnosed with Chronic Fatigue Syndrome/ Fibromyalgia Syndrome and with a positive test for any mycoplasmal infection were investigated for the presence of M. fermentans, M. pneumoniae, M. hominis and M. penetrans infections using forensic polymerase chain reaction. Infections were detected with M. pneumoniae (54/91), M. fermentans (44/91), M. hominis (28/91) and M. penetrans (18/91) of mycoplasma-positive patients, respectively. Multiple mycoplasmal infections were found in 48 of 91 patients, with double infections being detected in 30.8% or triple infections in 22%, but only when one of the species was M. pneumoniae and/or M. fermentans. Patients infected with different Mycoplasma spp. generally had a longer history of illness, suggesting that patients may have contracted additional mycoplasmal infections with time (Nasralla M, Nicolson G. Multiple Mycoplasmal Infections Detected in Blood of Chronic Fatigue Syndrome and Fibromyalgia Syndrome Patients. European J of Clin Microbiology & Inf Dis 1999; 18: 859-865). Dr. Kamaroff found no evidence of M. fermentens in CFS patients (1993) but another report found evidence of M. fermentens in roughly 30% of CFS patients (Vojdani A. Detection of Mycoplasma genus and Mycoplasma fermentens by PCR in patients with CFS. FEMS Immunol Med Microbiol 1998; 22:355-65). More information on Mycoplasma can be found at : http://www.cfsresearch.org/mycoplasma/index.htm -.
Intestinal bacterial overgrowth (Dysbiosis) may also play a role in these disorders. The data from a recent study suggests that bowel symptoms in fibromyalgia may be caused by small intestinal bacterial overgrowth. There have been associations made between fibromyalgia symptoms and Chlamydia species as well as Borrelia burgdorferi. In animal models, small intestinal bacterial overgrowth can result in bacterial translocation to mesenteric lymph nodes and can produce systemic effects. These systemic effects are believed to be mediated by endotoxins from Gram-negative bacteria. These endotoxin effects may explain the soft tissue hyperalgesia that is seen in fibromyalgia syndrome since injections of the endotoxin into lab animals results in similar hyperalgesia. The authors conclude that the intestinal symptoms of fibromyalgia patients may be related to small intestinal bacterial overgrowth and treatment of small intestinal bacterial overgrowth can result in overall improvement in intestinal symptoms (Pimentel M, et al, "Small Intestinal Bacterial Overgrowth : A Possible Association With Fibromyalgia,", J Musculoskeletal Pain, 2001;9(3):107-113)
Yeast Infections or Overgrowth Although the “Yeast Over-growth Syndrome” remains controversial in medicine, one researcher found evidence of increased Candida albicans with an abnormal immune response in some CFS patients (Cozon, G. et al. In vivo and in vitro abnormal cellular reactivity to Candida albicans in patients with CFS. Abstract, AACFS, 2003). A small study on 20 CFS patients in an "acute phase of illness" found elevated levels of Candida albicans in stool samples when compared to 19 healthy individuals without CFS (Evengard B. IACFS 2007).
Immune system abnormalities
CFS has been referred to as the "chronic fatigue - immune dysfunction syndrome" because studies have found dysfunction of the immune system, in which some components appear to be over reactive (termed “activated”), whereas other parts of the immune system have impaired function. Researchers have detected a number of chronic immune abnormalities in CFS patients, but no consistent or major abnormality that could indicate a primary cause. Researchers have identified certain auto-antibodies in many Fibromyalgia patients that affect neurologic and hormonal systems.
In one study, those patients with severe CFS symptoms, had higher-than-normal numbers of infection-fighting white blood cells known as killer T cells, which launch attacks on invading viruses and other disease-causing microorganisms. These same people had lower-than-normal levels of another white blood cell known as the suppressor T cell, which helps to shut down the immune response once the invading organisms have been killed. In such cases, the immune system becomes persistently overactive (activated) and produces fatigue, muscle aches and other symptoms of CFS. Other studies have indicated lower amounts of natural killer (NK) cells and cytotoxic T cells in some CFS patients, which might make them more susceptible to viral and other infections (Maher, K, Klimas, N, Fletcher, MA. Molecular defects associated with chronic fatigue syndrome. Abstract, AACFS, 2003). Abnormal NK cell function was found to be abnormal in both CFS patients and Gulf War Illness patients compared to healthy controls (Fletcher M. Klimas, N. IACFS 2007). Furthermore, these “activated” lymphocytes can pass through the blood-brain barrier and produce inflammatory chemicals called “cytokines” which leads to chronic low-level immune activation and inflammation in the brain (CDC Cold Spring Harbor Conference, Sept 2004).
Another area of research involves increase in the immune defense molecules “2-5A Synthetase” and “Rnase L.” Early studies revealed increased levels of these immune markers in CFS patients, in other words, the antiviral defense pathway is working overtime or is "upregulated" (Suhadolnik, R, et al. Clin Inf Dis, 18 (S96), 1994; Vojdani A, J Clin Lab Immunol, 1998; and Suhadolnik R, J CFS, 5,223, 1999). More recently, Dr. Suhadolnik demonstrated abnormalities of the RNase-L pathway and impaired function of natural killer cells in CFS patients but not in healthy “control” subjects or in patients with primary depression. Furthermore, these abnormalities correlated with elevated symptom scores (Suhadolnik R et al.. Clinical and Biochemical Characteristics Differentiating CFS from Major Depression and Healthy Control Populations: Relation to Dysfunction of RNase L Pathway. J CFS 2004).
To summarize, the evidence is very convincing that CFS patients have increased number of "activated T cells," poorly functioning natural killer (NK) cells, abnormal 2-5A Synthetase and RNase L pathway dysfunction, and elevated pro-inflammatory cytokines (TNF-a, IL-1, IL-6, INF-y) (Komaroff A. IACFS 2007).
Allergies and contributing environmental factors
Allergies- are the only consistent immune system abnormality among CFS patients. Some studies have reported that up to 80% of CFS patients have allergies to food, pollen, metals (such as nickel or mercury) or other substances, although other studies have found no greater incidence of allergies in CFS patients than in the general population. In any case, allergies appear to make CFS symptoms worse in those who have them. Elimination diets may help determine whether allergies to specific foods are present. Most allergic people, however, do not have CFS. Some research indicates that in some cases people with both allergies and emotional disorders, such as anxiety or depression, are more vulnerable to the effects of the inflammatory response, which is triggered by allergens. This response triggers the release of a number of immune factors, importantly cytokines, powerful factors that can cause fatigue, joint aches and fever and which can also affect the hypothalamus-pituitary-adrenal system in the brain. Another study found a similar relationship between depression, allergies and low back pain.
Heavy Metal Toxicity (namely Mercury) has been implicated in CFS/FMS (Clauw DJ, "The pathogenesis of chronic pain and fatigue syndromes : fibromyalgia" Med Hypothesis, 1995, 44:369-78; & Hanson S, Fibromyalgia, glutamate and mercury. Heavy Metal Bulletin, Issue 4, 1999, p3-6) and (Sterzl I et al. Mercury and nickel allergy : risk factors in fatigue and autoimmunity. Neuroendocrinology Letters 1999; 20:221-228). In our experience, those patients who test high in mercury need to have this toxicity addressed for optimal treatment of their underlying CFS/FMS.
Metabolic (mitochondrial) dysfunction
Mutations in Mitochondria- Another theory about the cause of CFS, as well as fibromyalgia and other illnesses, concerns mutations of the mitochondria, the part of each cell that supplies energy. Inherited disorders involving mutations that affect mitochondria are known to cause fatigue and muscle pain. One study reported that a specific genetic mitochondrial mutation called cytochrome b was associated with intolerance to exercise and aches and pains in a group of patients who had no known family history of mitochondrial genetic disease. Some research suggests that the mutation may be caused by free radicals, damaging particles released by the body's chemical processes. Two recent studies document increased free radicals and oxidant stress in CFS patients compared to healthy control subjects (Kennedy, G et al. Increased plasma isoprotanes and other markers of oxidative stress in chronic fatigue syndrome. Abstract, AACFS, 2003 and Vecchiet J et al. Antioxidiant status in chronic fatigue syndrome, CFS. Abstract, AACFS, 2003). More work is warranted on this interesting observation to determine if such a mutation may account for some cases of CFS, especially concerning the role of antioxidants.
A theory that may help tie in the various conditions associated with CFS suggests that a combination of factors, including allergies, stress and infections, may impair metabolic function by depleting adenosine triphosphate (ATP). This chemical stores energy in cells, and low levels are common in CFS patients. One study showing symptom improvement using a coenzyme called NADH that increased ATP levels lends support to this theory.
Muscle abnormalities in FMS
- Patients with CFS sometimes complain that they feel so weak that it seems as if their muscles are no longer working properly. It has been proposed that a defect in skeletal muscle could be the cause of the fatigue. However, physical, chemical and metabolic studies have not yet been found in the majority of CFS patients. Some research has detected muscle defects in fibromyalgia patients, which can be classified as follows : ° - Biochemical abnormalities - (Eg, One study reported that fibromyalgia patients had lower levels of the muscle-cell chemicals phosphocreatine and adenosine triphosphate (ATP) Such chemicals regulate the ebb and flow of calcium in muscle cells, an important component in their ability to contract and relax. If ATP levels are low, calcium is not "pushed back" into the cells and the muscle remains contracted. Such abnormal chemical levels could derive from signals in the brain) ° - Structural abnormalities - (Eg, some researchers have observed overly thickened capillaries in the muscle tissue of fibromyalgia patients, which could produce lower chemical levels as well as reduce the flow of oxygen-rich blood in the muscle tissue.) ° - Functional abnormalities - (Pain and stress of the disease itself can impair muscle function.)
Coagulation abnormalities
Dr. Berg has documented a unique “hypercoagulable state” in patients with CFS, FMS, Gulf War Illness and other conditions like Infertility and Multiple Sclerosis. He has named this abnormality “Immune System Activation of Coagulation (ISAC).” His model proposes that a variety of infectious agents (CMV, HHV6, Mycoplasma, Chlamydia etc), toxins, allergens or even vaccine contaminants stimulates the immune system to produce inflammatory chemicals (cytokines) which then results in increased blood viscosity (thickness) and microscopic “clotting” which causes localized decrease in blood flow and oxygenation to varies body tissues including the brain. These markers of hypercoagulation include fibrinogen, prothrombin fragment 1&2, thrombin anti-thrombin complexes and soluble fibrin monomer. He proposes the use of heparin (which must be injected into the skin or vein) for treatment of this abnormality (Hannan KL, Berg E, et al. Activation of the coagulation system in Gulf War Illness : a potential pathophysiologic link with chronic fatigue syndrome : a laboratory approach to diagnosis. Blood Coag Fibrinolysis 2000, 11:7). A follow up study of these coagulation factors revealed the possibility that a hereditary gene defect combined with the immune system activation of coagulation work together to produce the end result of microscopic clotting and decreased blood flow to the body’s tissues in the CFS/FM patient (Harrison H et al. Procoagulant genetic factor in a pooled cohort of 582 chronic fatigue syndrome, fibromyalgia and related chornic illnesses, AACFS, Oct 2004).
Psychological and social effects
Although not primary causes, psychological and social factors may contribute to CFS/FMS in three ways : - They could make individuals susceptible to CFS/FMS - They may play some role in triggering the onset of the condition. - They may help perpetuate it by stressing the immune system
Studies have reported a greater incidence of severe experiences of victimization from emotional and physical abuse in patients with fibromyalgia than in the general population. Most often the abuse originated from family or partners. This suggests that post-traumatic stress syndrome or chronic stress may play a strong role in the development of this disorder in some patients. Post-traumatic stress disorder (PTSD) is an anxiety disorder that is a reaction to a specific traumatic event. Symptoms of this condition, which can occur for years after the traumatic event, include emotional withdrawal, hopelessness, irritability, mood swings, sleep problems, inability to concentrate and an excessive startle response to noise. There is some evidence that PTSD actually results in changes in the brain, possibly from long-term overexposure to stress hormones.
Gulf War illness : chronic fatigue-like symptoms after the Gulf War
Gulf War veterans have been intensively studied because of a high percentage reporting CFS symptoms. One major study reported that 45% of Gulf War veterans met the overall criteria for chronic fatigue syndrome, with 6% having severe cases. Women veterans had three times the risk as men. Interestingly, 15% of the noncombat personnel, representing the general population, reported the same problems, although the cases in general were less severe than in the veterans. Because such symptoms have occurred in other veteran groups, some experts suspect that post-traumatic stress syndrome may be responsible for the symptoms in some cases. After finding that stress weakens the blood-brain barrier, some experts believe that, in extremely stressful situations such as the Gulf War, this weakened barrier may allow agents, such as small viruses, to pass into the brain causing damage and triggering CFS symptoms. Whether uncovering the causes of the syndrome in Gulf War soldiers can be applied to civilian cases of CFS, however, is not known. One 2000 study has heavily implicated multiple vaccinations given to military personnel during the Gulf War (but not those given before). More than a dozen different illnesses have been detected in over 70,000 soldiers examined for this problem. Some researchers identified an unusual bacteria-like organism known as Mycoplasma fermentans in nearly half the veterans who suffered from Gulf War syndrome and one scientist speculated that it might have been developed for biological warfare. Some researchers suspect that the symptoms were caused by an experimental vaccine that contained a substance called squalene. High levels of antibodies to this compound have been found in the blood of veterans with CFS symptoms. An investigation is underway. Still other studies have found that up to 20,000 troops may have been exposed to low levels of the nerve gas sarin.
How is CFS/FMS diagnosed ?
Diagnostic criteria There is no unequivocal objective method for diagnosing these sister conditions. The criteria used for studying CFS and FMS are very helpful, particularly if the patient does not have any accompanying disorder, such as depression or arthritis, that could complicate the diagnosis. Failure to meet the criteria, however, does not rule them out. It should be suspected in any patients with severe fatigue and muscle or pain when no identifiable cause has been found.
Medical and Personal History A physician should always take a careful personal and family medical history, which would include a psychological profile and a history of any factors that might be indicative of disorders other than fibromyalgia. Such factors might include recent weight change, physical injuries, infectious diseases, muscle weakness, rashes and any instances of sexual, physical or substance or alcohol abuse. The patient should report any drugs being taken, including vitamins and over-the-counter or herbal medications.
Physical examination - Pressure on tender spots - Any physical examination for fibromyalgia requires that the physician press firmly on all potential tender spots. They must be painful when pressed, not simply tender. In addition, for a diagnosis of fibromyalgia, these tender sites are not typically accompanied by signs of inflammation, such as redness, swelling or heat in the joints and soft tissue. The pressure points may also change in location and sensitivity over time. A physician, then, may re-check pressure points that do not respond the first time in patients who have other significant symptoms. - Detection of other causes of symptoms - A physical examination also includes scrutiny of nails, skin, mucous membranes, joints, spine, muscles and bones to help rule out arthritis, thyroid disease and other disorders.
Other tests There are no blood, urine or other laboratory tests that can proof the the specific diagnosis of CFS or FMS. Tests for specific diseases depend on family histories and other symptoms. They may include thyroid and liver function tests, blood count, tests of certain antibodies and sedimentation rate.
Simply measuring blood pressure will not identify CFS patients whose condition might be caused by Neurally Mediated Hypotension (an abnormal drop in blood pressure). A tilt test, whereby an individual lies on a table tilted upright at a 70-degree angle for a prolonged period, may confirm CFS caused by Neurally Mediated Hypotension if the patient feels lightheaded, sick and faint after several minutes. A specialized test of the autonomic nervous system (ANSAR) can be easily performed in the office and detects abnormalities in the autonomic nervous system without the stress of a tilt table test.
Other specialized tests may include growth hormone, adrenal hormone assay, tests for heavy metal toxicity, stool tests for bacterial/fungal overgrowths, for infections (RNase-L, EBV, HHV6, Mycoplasma, Lyme etc) and subtle inflammation markers like HS-CRP. Some experts are hoping that this or other markers may reveal a biologic basis for CFS and also establish a method for diagnosing it. Follow-up psychological profile testing may be suggested if laboratory results do not indicate a specific disease.
Cardiac stress tests with oxygen consumption measurements can sometimes be helpful in finding physiologic abnormalities in CFS patients. However, a recent small study of CFS patients versus healthy controls revealed that CFS patients had a significant worsening of their oxygen consumption when the test was repeated 24 hours later whereas healthy individuals had normal results on both the initial and repeat test (Ciccolella, M. IACFS 2007). This two-step cardiac stress test with oxygen consumption analysis appears to document the significant post-exertional exhaustion that is the hall mark of CFS.
How serious are these conditions ?
Severity of symptoms
The severity of chronic fatigue syndrome varies. In extreme cases, patients are bedridden and can do virtually nothing, including even light housework. More often, CFS sufferers can work at least part-time. Most commonly, patients with CFS report that they have trouble fulfilling both home and work responsibilities. Most patients say that while fatigue is the most incapacitating symptom, those of mental impairment, such as an inability to concentrate, are the most distressing. Some studies indicate that although general intelligence is not impaired, CFS patients test lower in certain mental functions, particularly speed and efficiency in processing complex information. In such studies, this impaired mental function occurs regardless of the presence or absence of depression or other psychiatric disorders. One study found that the mental impairment in CFS patients parallels the degree of their physical impairment, indicating that the disease process itself may exert a neurologic effect.
Like CFS, Fibromyalgia can be mild or disabling and the emotional repercussions can be substantial. About half of all patients have difficulty with or are unable to perform routine daily activities. Estimates of patients who have had to stop work or change jobs range from 30% to 40%. The pain, emotional repercussions or sleep disturbances may lead to self-medication and overuse of sleeping pills, alcohol, drugs or caffeine.
Long-term outlook in adults Because the illness has been undefined and there are few objective measures for recovery, experts have found it difficult to determine the long-term outlook of CFS. Some physicians have observed that patients whose symptoms began abruptly following a severe viral illness recovered completely after six months to a year, whereas patients whose problems developed slowly and insidiously experienced symptoms for a longer period of time. Patients who report that they can think clearly most of the time, who do not have other physical or emotional complaints beyond CFS symptoms and who sleep well are more likely than other CFS patients to experience improvements in their fatigue over time. Nevertheless, studies have reported that between 58% and 72% of patients who complain of chronic fatigue (whether CFS or idiopathic fatigue) continue to experience it after a year and in one study nearly 60% were still fatigued at two years. One small 1999 study observed that even after four years few patients with severe CFS had returned to their pre-illness state. Yet another study, however, found that when patients with severe CFS were treated with a multidisciplinary rehabilitation program, nearly all improved significantly and the gains were maintained for at least a year afterward. Many patients with less severe chronic fatigue have reported turning a corner after a year or two and slowly regaining energy despite some setbacks along the way. Some patients get progressively worse, but the disorder is not fatal. Although children with symptoms of chronic fatigue have not been rigorously studied, some studies indicate that children generally have a better prognosis than adults and recover after one to four years in up to 95% of cases.
Some studies indicate that fibromyalgia symptoms remain stable over the long term, while others report a better outlook, with 25% of patients in remission two years after diagnosis. Although the disease is chronic, it is neither progressive nor fatal and remission can occur in many patients who participate in disease management programs. Patients with secondary fibromyalgia, particularly when it is caused by injury, tend to have a more severe and less easily treated condition than those with primary fibromyalgia.
Outlook in children Children with Fibromyalgia tend to have better outlooks than adults do. In adult patients who were studied for four and a half years, those who had adequate exercise had the most promising outcome; those with a significant life crisis or who were on disability had a poorer outcome than others. Outcome was determined by improvements in the patients' capacity to work, their own feelings about their condition, pain sensation, disturbed sleep, fatigue and depression.
General treatment guidelines
Since there is no one cause for CFS/FMS, there is no one treatment ! Treatments can be thought of in two distinct categories and are usually given concurrently. - Symptomatic therapies that address the worst symptoms in each individual patient (ie. pain medication, sleep agents, antidepressants). - Therapies designed to address those specific HPA axis dysfunctions, immune dysfunctions, infections, toxic, hormonal or metabolic disturbances found in each person evaluated in a comprehensive manner.
If the specific underlying factors can be isolated to each given individual patient and targeted with specific therapies for those specific abnormalities, then less symptomatic therapy is required and improvement ensues. Treatments usually involves a combination of a variety of therapies the achieve the maximum results for each person.
The specific tender points and generalized pain suffered by Fibromyalgia patients are most likely the end-points of a disease process that starts in the brain. Therefore, treatments should involve not just dealing with the pain centers but must be a multi-faceted approach. One study found that interdisciplinary treatment programs were effective in significantly improving pain in 42% of patients. After treatment stopped, improvements in pain and other symptoms, including depression and sense of physical capability, persisted for at least six months, although patients tended to become fatigued again. The effectiveness of the treatments tended to depend on how depressed the patients were, the sense of their own disability, personal support networks, and whether the cause was known. The severity of the pain at the start of treatment had little to do with outcome.
Dr. Teitelbaum demonstrated success with the multi-factorial treatment of 72 FMS patients (38 active, 34 placebo; 69 also met CFS criteria). All patients received all active or all placebo therapies as a unified intervention. Patients were treated, as indicated by symptoms and/or lab testing, for : (1) subclinical thyroid, gonadal and/or adrenal insufficiency, (2) disordered sleep, (3) suspected Neurally Mediated Hypotension (NMH), (4) opportunistic infections and (5) suspected nutritional deficiencies. His conclusions : significantly greater benefits were seen in the active group than in the placebo group for all primary outcomes. Using an integrated treatment approach, effective treatment is now available for FMS/CFS (Teitlebaum J et al. Effective Treatment Of Chronic Fatigue Syndrome (CFIDS) & Fibromyalgia (FMS) - A Randomized, Double-Blind, Placebo-Controlled, Intent To Treat Study. J CFS 2001 8:2).
Preparation for treatment Patients must have realistic expectations about the long-term outlook and their own individual capabilities. It is important to understand that the condition can be managed and patients can live a full life. The following tips may be helpful in embarking on a treatment program for fibromyalgia : - Patients must begin all treatments with the attitude that they are trial and error. No physician, even an expert, has a clear treatment solution, because little significant research has been conducted on this disorder. For example, there were no major trials on drug therapies for fibromyalgia reported during 2000. Patients and doctors need to work together to make the best choices for individual symptoms and concerns. - Therapies are prolonged, in some cases life-long and patients should not be discouraged by relapses. - Enlisting family, partners and close friends, particularly with exercise and stretching programs, can be helpful. - Becoming involved with support groups of fellow-patients has also benefited many patients. Support groups may also benefit family members, particularly parents of children with fibromyalgia. One study noted that the severity of the disorder increased in children whose parents were less able to cope with their children's pain. - Improvement is subjective and some patients are pleased with only a 10% reduction in pain and other symptoms.
General treatments categories - Exercise and Physical Therapy - Lifestyle Modification : Stress Management, Diet, Sleep Hygeine - Psychological Therapies such a Cognitive Behavior Therapy - Medical Therapies : Medication, hormone therapies - Body Based Therapies : Osteopathic/Chiropractic Manipulation, Massage, Acupunture etc. - Complementary and Alternative Therapies : Herbs, Vitamin Therapies.
Physical therapy and exercise Most CFS patients experience profound fatigue following even mild to modest exercise and it is the primary factor in the low-activity levels in these patients. A recent study found, however, that 75% of patients who were able to engage in exercise, particularly aerobic exercise, reported improvement in fatigue, normal functioning and fitness after a year. Another recent study demonstrated that light intensity interval training for CFS patients can be beneficial and slowly produced improvements in their exercise capacity and physical functioning without increased fatigue or other CFS symptoms (Gudrun, L. et al. Low intensity, interval training in women with chronic fatigue syndrome. Abstract, AACFS, 2003). Low intensity exercise was again found to increase physical capacity without worsening CFS/ME symptoms in a study of 14 women who completed a 10 week low intensive interval training program (Lennartsson C. IACFS 2007).
It is necessary to go slowly, however, to prevent relapse as some studies have shown too aggressive exercise to make some CFS patients worse (Whiteside, 2004; Paul, 1999; Blackwood, 1998). Patients should gradually increase activity level, keeping within limits and avoiding over-exertion. This is termed 'Activity Pacing'. An incremental program of activity, beginning with as little as two minutes of moderate exercise a day, is suggested, although capacity varies greatly among CFS sufferers. The goal is to increase activity by about 20% every two to three weeks. Setbacks will occur, but patients should not become discouraged. Rather, they should experiment with various forms of physical activity that suit their available energy levels. Some patients report great benefits from Yoga or Tai chi, which combine exercise with meditation.
One of the best things you can do if you have fibromyalgia is exercise. Exercise relieves much of the pain fibromyalgia causes. Some people find that exercise makes all their pain go away. You will also feel better if you have some control over your own care and well-being. Physical activity prevents muscle atrophy, increases a sense of well-being and, over time, reduces fatigue and pain itself. Many studies have indicated that exercise is the most effective component in managing fibromyalgia and patients must expect to undergo a long-term exercise program ("Effect of a Randomized, Controlled Trial of Exercise on Mood and Physical Function in Individuals With Fibromyalgia," Gowans SE et al, Arthritis Care Res, December 2001;45(6):519-529). - Some patients with fibromyalgia avoid exercise for fear it will exacerbate their pain. However, according to studies, any pain caused by exercising subsides within 30 minutes. A very gradual incremental program of activity, beginning with mild exercise and building over time, is important to help patients comply with exercise. - Start your exercise program slowly, because at the beginning, exercise may make your pain worse. Begin with stretching exercises and gentle, low-impact activity, such as walking or bicycling. Some muscle soreness is normal when you're starting to exercise, but sharp pain may be a sign that you have overworked your muscles. Patients who attempt strenuous exercise too early actually experience an increase in pain and are likely to become discouraged and quit. It should be noted that even walking two or three times a week is helpful. Some may need to start out with 5 minutes of exercise per week and add 1 minute per week- in over half a year, you will be up to 30 minutes of exercise per day. - As you progress with exercise, it will become more comfortable for you. In order for exercise to help, you must do it regularly. The goal is to get started and keep going, to gain relief from pain and to improve sleep. Some tips may be helpful : ° - Walking : Start slowly by walking for 5 minutes the first day. The next day, add a minute to this total. Keep adding 1 or 2 minutes a day until you are walking for 60 minutes a day. When you reach this point, walk for at least 1 hour, 3 or 4 times a week. If you find yourself struggling as you're working your way up to walking for 60 minutes, go back to a length of time that was comfortable for you and continue walking for this period of time for several days. Then continue to increase the minutes again until you reach the goal of 60 minutes. Try as many times as you need to reach the goal of walking for 60 minutes. ° - Walking/jogging : After you feel comfortable with walking 3 or 4 times a week, you can alternate walking with slow jogging. Walk for 2 blocks, then jog for 1 block, walk for 2 blocks, jog for 1 block, and so on. Do this as often as feels comfortable and extend your exercise for longer periods if you feel comfortable. ° - Bicycling : Stationary bicycles (exercise bikes) offer the benefit of exercising indoors. Keep track of your mileage or set a goal of exercising for 60 minutes. ° - Tai Chi and Yoga : Can be excellent choices for the FM patient as they are low impact and involve stretching and motion without excessive exhaustion.
The type of exercise you choose is up to you. The important thing is that you start exercising and keep doing it. Every patient must be prepared for relapse and setbacks, which are nearly universal, but this should not dissuade the patient from exercising. Patients should experiment with various forms of physical activity that can be tolerated using their available energy levels. - Aerobic and Strength Training Exercise - Strength training and regular low-impact aerobic exercise are very helpful for raising the pain threshold, although it may take months to perceive benefits. Desirable exercises are walking, swimming and using stationary bikes. Swimming and water therapy, which eliminate weight-bearing, appear to be excellent choices for getting started. - Training Index - Some experts recommend the use of a training index for gauging progress and establishing a goal. This index is the product of three calculations : ° - The duration of exercise in minutes. ° - Number of days per week that the patient exercises. ° - The percentage of maximum heart rate (See 'Determining Percentage of Maximum Heart Rate' below).
People just beginning an exercise program should start with an index of 10 to 25 and aim over time for at least 42. The following are some examples for determining these indexes using exercise goals. - To achieve an initial index of 15 the patient strives for the following exercise goals : A maximum heart rate percentage of 60% (.60) during exercise performed for 5 minutes 5 times a week. (the index is calculated in such a case by multiplying .60 x 5 x 5) - The later goal of an index of 42 could be achieved with the following a maximum heart rate percentage of 70% that occurs with 20-minute exercises three days a week (.70 x 20 x 3 = 42).
Stretching exercises should be performed for about 10 minutes before aerobic exercise, but they are not considered part of the total exercise time that the patient uses in calculating the index goal.
Determining percentage of maximum heart rate
- Determine the maximum heart rate by subtracting one's age from 220. - Determine the heart rate by measuring the pulse either at the carotid artery on the neck or on the inside of the wrist during a workout. It's easiest to count pulse beats for 10 seconds, then multiply by six for the per-minute total. - Calculate the percentage of maximum heart rate, by dividing the exercise heart rate by the maximum heart rate and multiply by 100
Physical therapy
The use of physical therapy may be very helpful. One study suggests that such therapy may reduce muscle overload, reduce fatigue from poor posture and positioning and help condition weak muscles.
Life style modification therapies
Establish regular sleep routines
Sleep is essential, particularly since pain is aggravated by disturbed sleep. Improvement is low in those who are unable to sleep consistently and at night. Swing shift work, for example, is extremely hard on fibromyalgia patients (for tips on improving sleep, see our handout on 'Sleep Hygeine').
Diet
Some fats may be beneficial. Some studies report some improved symptoms in patients who consumed black currant, evening primrose and fish oils. These oils contain a polyunsaturated fatty acid known as gamma linoleic acid, which seems to block the release of cytokines and prostaglandins, important immune factors that play major destructive roles in inflammatory diseases. For those with demonstrated low blood pressure, increasing the amount of salt in the diet may be helpful.
A small 2000 study in Finland suggested that a vegan diet (no meat, dairy or eggs plus uncooked fruits, vegetables, nuts and germinated seeds) had beneficial effects on fibromyalgia symptoms including pain, stiffness and quality of sleep. In addition, the diet was associated with lower weight and cholesterol levels. There are no large scale studies telling us that any specific dietary factor is effective in managing fibromyalgia. Oils containing omega-3 fatty acids are of particular interest for arthritic pain. Such oils are found in cold water fish and can be purchased as supplements called EPA-DHA or omega 3.
We have found a “low starch/low grain diet” generally beneficial : Breakfast suggestions - Organic oatmeal, milk, soymilk or goat’s milk, 3 Tbsp. fresh ground flaxmeal - Hot brown rice cereal w/cinnamon, green tea - Organic cottage cheese with flax oil, organic fruit or raw nuts (almonds, walnuts), green tea - Organic yogurt (no sugar), 1 Tbsp. flax oil or 3 Tbsp. ground flaxmeal, - ½ cup organic berries - Poached organic omega-3 eggs or three egg omelet, sweet potatoes w/rosemary - 2 organic eggs any style, 1 slice whole grain toast, 3 tablespoons freshly ground flaxmeal Lunch and dinner suggestions - Season sardines in water (green and white label), green salad - Flank steak, baked potato, green salad with flax oil dressing - Broiled red snapper, steamed broccoli, baked yams - Large mixed green salad w/ oil and lemon juice, small can of tuna, chopped yellow and sweet red pepper - Broiled red snapper, steamed broccoli, green beans or other vegetable - Beef, lentil and vegetable soup, (celery, carrots, onion, cabbage) - Chicken salad made with sugar-free mayonnaise, roasted vegetables, spinach salad - 1 cup cottage cheese or yogurt, 1 tablespoon flax oil, 1 tablespoon natural preserves - 1 chicken breast with rosemary, ½ cup black eyed peas, roasted onions or garlic, spinach salad. Snacks - Protein shakes with freshly ground flaxseeds added, handful of raw almonds, hazelnuts, walnuts, brazil nuts or sesame seeds, an organic apple, pear or grapes, sugar-free yogurt, rice cakes with nut butter - Green vegetable juices : three 6-ounce glasses per day freshly made only from green vegetables (celery, spinach, dandelion, zucchini work well). - Herbal teas : licorice, ginseng and green tea. Avoid - Sugar, hydrogenated oils, corn oils, soft drinks, alcohol.
Coping and stress reduction techniques
Relaxation and stress-reduction techniques are proving to be helpful in managing chronic pain. There is certainly evidence that people with fibromyalgia have a more stressful response to daily conflicts and encounters than those without the disorder (for more information, see our 'Stress Fitness Handout'). A number of relaxation and stress-reduction techniques have proven to be helpful in managing chronic pain : - Deep breathing exercises - Muscle relaxation techniques - Imagery techniques - Hypnosis - Biofeedback.
Hypnosis In one controlled study, hypnosis was more effective than physical therapy in improving function and reducing pain.
Biofeedback Evidence suggests that biofeedback techniques may be helpful for fibromyalgia patients. During biofeedback, electric leads are taped to a subject's head. The person is encouraged to relax using methods such as those described above. Brain waves are measured and an auditory signal is emitted when alpha waves are detected, a frequency that coincides with a state of deep relaxation. By repeating the process, subjects associate the sound with the relaxed state and learn to achieve relaxation by themselves. One study showed that biofeedback/relaxation training and structured exercise programs produced short- and long-term benefits for individuals with fibromyalgia in the areas of self-efficacy, disease severity and physical activity. In general, the improvements were modest (Buckelew SP et al, "Biofeedback/Relaxation Training and Exercise Interventions for Fibromyalgia : A Prospective Trial," Arthritis Care and Res, June, 1998;11(3):196-209)
Coping help The Stanford Self Management Model has been validated and found very helpful in other chronic medical conditions. Its premise is logical, rational and has attributes that could be very beneficial for the CFS/FMS patient. There exists a Self Help Manual "Living a healthy life with Chronic conditions" – cfr. : http://www.amazon.com/Living-Healthy-Life-Chronic-Conditions/dp/0923521534 -. In addition, there is an online site which is based upon the Stanford Model : www.cfidsselfhelp.org -.
Medical therapies
The primary goal of drug therapy is to address the most significant symptoms in these conditions : improve sleep, improve fatigue and thinking, improve depression, improve autonomic dysfunction and pain management.
Symptomatic Treatments - Treatments for Depression and Anxiety - Studies suggest that antidepressants help between a third and a half of patients with FSM. Doses used for fibromyalgia are generally lower than for depression, so combinations may be an option. Benefits may be strongest with a combination of drugs from two classes, the tricyclics and SSRIs. However, none have been well researched. It should be noted that some patients report worse symptoms with antidepressants. ° - Saint John’s Wort has been shown beneficial for mild to moderate depression, anxiety, insomnia (enhances REM sleep) and also has anti-viral and anti-inflammatory activity. There have been no studies with SJW in CFS or FMS. ° - Tricyclics - Tricyclics not only help relieve depression but they also have properties that reduce sleeplessness and muscle pain. The tricyclic drug most commonly used for fibromyalgia is amitriptyline (Elavil, Endep), which produces modest benefits with pain, but which can lose effectiveness over time. Other tricyclics include desipramine (Norpramin), doxepin (Sinequan), imipramine (Tofranil), amoxapine (Asendin) and nortriptyline (Pamelor, Aventyl). Generally only small doses are necessary for relief of fibromyalgia, so, although tricyclics have a number of side effects, they may occur less frequently in fibromyalgia patients than in those taking tricyclics for depression. Side effects most often reported include dry mouth, blurred vision, sexual dysfunction, weight gain, difficulty in urinating, disturbances in heart rhythm, drowsiness and dizziness. Amitriptyline, doxepin and trazodone are the most sedating and desipramine is the least sedating. Like all medications, tricyclics must be taken as directed; overdose can be life threatening. ° - Selective Serotonin-Reuptake Inhibitors (SSRIs) - Selective serotonin-reuptake inhibitors (SSRIs) increase serotonin levels in the brain. Serotonin is a chemical messenger important for feelings of well being. Commonly prescribed SSRIs include fluoxetine (Prozac), sertraline (Zoloft), paroxetine (Paxil) and fluvoxamine (Luvox) and Lexapro. In some patients, they may improve sleep, fatigue, pain and well-being. SSRIs should be taken in the morning, since they may cause insomnia. Common side effects are agitation, nausea and sexual dysfunction, including delayed or loss of orgasm and low sexual drive. One study of 60 women with FMS found that that Fluoxetine (prozac) was effective on most outcome measures and generally well tolerated in women with fibromyalgia but the effects on tender points and myalgic scores were not so clear-cut (L. Arnold. "A randomized, placebo-controlled, double-blind, flexible-dose study of fluoxetine in the treatment of women with fibromyalgia" The American Journal of Medicine 2002;112(3):191-197). Another study revealed the combination of prozac with amitriptyline was better than either one alone for FMS symptom improvement (Goldenberg D et al. A randomized, double blind crossover trial of fluoxetine and amitriptyline in the treatment of fibromyalgia. Arthritis Rheum 1996, 39:1852-9) SSRI medications appear to have little value for CFS beyond treating any accompanying depression. ° - Other Antidepressants - Nefazodone (Serzone) a newer, so-called designer SSRI, produced moderate benefits in CFS patients' mood, fatigue and sleep disturbance in one small 1999 study. Trazodone (Desyrel) is an antidepressant that might be specifically helpful for fibromyalgia suffers. It is also very sedating. Venlafaxine (Effexor) - Is an antidepressant that increases both serotonin and norepinephrine in the brain. It may be of use in FMS (Ninan PT. Use of venlafaxine in other psychiatric disorders (Depress Anxiety 2000, 12 Suppl 1:90-4). ° - Anti-Anxiety Medications : If anxiety is also a problem, an anxiety-relieving drug, such as alprazolam (Xanax) or Lorazepan (may be prescribed, although anti-anxiety drugs can become addictive if used for prolonged periods and are not usually recommended). - Phototherapy - The use of phototherapy may be effective treatment for patients with CFS whose symptoms have a seasonal variability (worse in the winter time) that is similar to those of patients with seasonal affective disorder (SAD). Patients with SAD experience more depression during winter than summer months. With phototherapy, the patient sits a few feet away from a box-like device that emits very bright fluorescent light (10,000 lux) for about 30 minutes every day. It is best performed immediately after awakening in the morning. - Muscle Relaxants - Cyclobenzaprine (Flexeril) relaxes muscle spasms in specific locations without affecting overall muscle function. It is related to the tricyclic antidepressants and has similar side effects, the most common being dry mouth, drowsiness and dizziness. Other muscle relaxants include Soma and Zanaflex. - Sleep Medications - ° - Non Prescription Natural Agents . Melatonin - 3-10 mg -1 at bedtime . 5 HTP (5 Hydroxytryptophan) -1 00 to 400mg at night. Naturally stimulates Serotonin. 5-HTP has been shown to be effective in treating a wide variety of conditions, including fibromyalgia and depression (Birdsall TC. 5-Hydroxytryptophan: a clinically-effective serotonin precursor. Altern Med Rev 1998; 3:271-80) . Passion Flower (Passiflora) - 100 to 200mg at night. This is also good for anxiety during the day. . Kava Kava - 30% extract - 250mg capsules -1 to 3 capsules at night (if a rash develops add a B-complex ,50mg at night -and stop/decrease the dose/frequency of use. There are recent reports in Germany of rare occurrence of liver dysfunction in patients taking Kava and liver enzymes should be monitored if this therapy is attempted. ° - Prescription Medications . Doxylamine (Unisom For Sleep) - 25 mg at night (an antihistamine) . Benadryl (dihydramine) - 25-50mg at bedtime (an antihistamine) . Ambien (zolpidem) - 10 mg- ½ to 1 at bedtime. If you tend to wake during the night, leave an extra 1/2 to 1 tablet at bedside and you can take it as needed to help you sleep through the night. . Elavil (amitriptyline) - 10 mg- ½ to 5 tablets at bedtime. May cause weight gain or dry mouth. Good for nerve pain and vulvadynia. . Doxepin (sinequan) - 10mg capsule at bedtime. May cause weight gain or dry mouth. Good for nerve pain and vulvadynia. . Desyrel (trazodone) - 50 mg – ½ to 6 at bedtime. Although sedating, it can be used (50-250mg at a time) for anxiety. Do not take over 450mg a day (or 150mg a day if on other antidepressants). Increases stage III and IV sleep. . Klonopin (clonazepam) – ½ mg -begin slowly and work your way up as sedation allows. Take ½ tablet at bedtime increasing up to 6 tablets at bedtime as needed. Can be effective for sleep, pain and Restless Legs. The combination of klonopin ande doxepin may be more useful than either alone. . Soma (carisprodol) – ½ to 1 at bedtime. This is very good if pain is severe. . Flexeril (cyclobenzaprine) - 10 mg- ½ to 2 at bedtime. Muscle relaxant --can cause dry mouth. . Remeron (mirtazapine) - 15mg - 1 to 3 tablets at bedtime (especially helpful if you feel like you're "hibernating" during the day). Increases stage III and IV sleep . Serzone (nefazodone) - Increases stage III and IV sleep . Xanax (alprazolam) – ½ mg – ½ to 4 tablets at bedtime. This is short-acting and gives a good 3 to 5 hours sleep with less hangover in the morning. . Sinemet 10/100- 1 at 6 to 9PM each evening for Restless Leg Syndrome. - Pain Relievers - Pain relief is of major concern for patients with fibromyalgia and frequently required in CFS. . Acetaminophen (Tylenol) is most often recommended but can reduce glutathione levels (felt important by some researchers for liver and brain detoxification). See our monograph on Glutathione for further information on this very important antioxidant/detoxifier. . Anti-inflammatory drugs, which are commonly used for arthritic conditions are mush less useful for the pain of fibromyalgia, since the pain is not caused by muscle or joint inflammation. Such drugs include corticosteroids and nonsteroidal anti-inflammatory drugs (NSAIDs), such as aspirin, ibuprofen (Advil) and others. . Tramadol (Ultram) is a pain reliever that has been used as an alternative to opioids. It has helped some people and was thought not to be addictive, although dependence and abuse have been reported. It can cause nausea. . Tricyclic antidepressants (elavil, doxepin, norpramin) decrease the pain sensations in the brain and thus can be useful in chronic pain states. . SNRI's (Venlafaxine, Milnacipran, Duloxetine)- These agents, which work on both serotonin and norepinephrine receptors appear to provide benefits in the type of pain found in FMS. . Gabapentin (Neurontin) and Pregabalin are anti-seizure medications that can help neuralgic type pain. that is helpful for some neuralgic type pain. Other anti-seizure medications that may be useful include Lamictal, Trileptal and Topomax. . Opioids (Oxycontin, Morphine etc) have been shown to be not helpful in the kind of pain that FMS/CFS patients experience, called "central pain." Since this class of pain relievers are not beneficial and may lead to dependence and addiction, opioids should be avoided. . Intravenous Lidocaine has been suggested to be helpful in chronic pain conditions in several small studies. Mexilitine (oral form of lidocaine) may also be tried.
Targeting pressure points and stretching techniques
Much of the pain experienced by patients occurs where muscles join tendons or bones, particularly when the muscles are stretched. Stretching or flexibility exercises, are part of the warm-up and cool-down routines of any regular program. Stretching technique used for muscle relaxation and pain reduction in fibromyalgia, however, are different and employ injections or cooling agents to inactivate the pressure points so that muscles can be stretched. These techniques must be performed by a person other than the patient, usually a family member or close friend. With use of either injections or the spray, the benefits may last from a few days to weeks. Neither the spray nor the injection is useful without muscle stretching. - Spray and Stretch : Tender points are sprayed with a “freezing” spray and then manually stretched - Trigger-Point Injections - In some cases, "trigger-point injections" of an anesthetic may be used for particularly painful tender points as an aid to stretching. The injection causes intense, transient pain in the trigger point. After the medication has taken effect, however, the ability to stretch the muscle is greatly enhanced. There is some soreness afterward, which can be severe. After an injection, spraying the whole muscle with cooling agents may inactivate less severe tender points. In some cases, injections may be needed two or three times over six to eight weeks. It should be noted that the benefits of this treatment may not be apparent immediately.
Treatment of specific abnormalities
Treatment for low stress (adrenal) hormones Cortisone Therapy - Some evidence exists that patients with CFS may be deficient in cortisol, a steroid hormone. Studies testing the steroid drug hydrocortisone have reported increased energy and less fatigue in patients taking it. However, side effects including insomnia, increased appetite, weight gain and, more seriously, suppression of the adrenal gland, make this therapy unacceptable. A recent study reporting improvement with very low doses of cortisone (5 mg to 10 mg daily) with only minor side effects may make this therapy feasible for some patients. In this trial, 32 CFS patients treated with 5-10mg hydrocortisone for 28 days and showed ‘significant reduction in self-rated fatigue and disability in patients with chronic fatigue syndrome’ (Cleare et al; The Lancet, 1999, Vol. 353 February 6, p455-32). However, in another randomized controlled trial of hydrocortisone therapy (McKenzie at al) used a higher dose of hydrocortisone treatment of 25 - 35mg daily. They found that this dose was associated with some improvements in symptoms but caused significant adrenal and immune suppression. Neither of these research teams currently recommend the use of hydrocortisone as a treatment for ME/CFS. They stress that further studies, involving longer durations of treatment and follow-up, are required to assess the long-term effectiveness and safety of this treatment.
DHEA- DHEA is another adrenal hormone that is often found to be low in CFS/FMS patients. 60% of CFS patients who received “optimal” doses of DHEA by lymphocyte drug sensitivity testing (LDST) revealed clinical improvement in CFS symptoms (McCoy J. Immunomodulatory properties of DHEA as a potential treatment for CFIDS. The CFIDS Chronicle Physician’s Forum, Fall, 1993).
In our opinion, diagnosis and treatment of adrenal dysfunction is cornerstone of successful treatment of these disorders. We aggressively support the adrenal with the use of adrenal glandular extracts, licorice, phosphatidyl serine derivatives and DHEA as indicated by specific adrenal testing. See the section on 'Complementary and Alternative Therapies' for more information on these agents.
Treatment of neurally mediated hypotension (autonomic nervous system dysfunction) In one study, 76% of patients diagnosed with and specifically treated for neurally mediated hypotension (NMH) experienced improvement within a month and in 40% of these patients, chronic fatigue symptoms completely or nearly completely resolved. For treating NHM, the physician might first recommend nonmedicinal measures, such as increasing salt content in the diet. Patients are instructed to perform exercises before getting out of bed that flex the feet so that the blood moves up toward the head. They are encouraged to avoid excessive activity after meals. They should not use medications that reduce blood pressure. Special support garments may help to prevent circulating blood from pooling in the lower part of the body and to return it to the heart. If the condition does not improve, certain medications may be tried in combination or alone. Midodrine (ProAmatine) is a drug that increases smooth muscle tone and blood pressure and reduces symptoms of NMH. Adverse effects include itching, numbness and tingling, but the drug is well tolerated. A wide range of drugs normally used for other disorders have been used to treat NMH, but physicians have had difficulty adjusting them so that they would be effective for NMH without causing distressing side effects. Such medications include fludrocortisone (an oral steroid), phenylpropanolamine or ephedrine (decongestants), indomethacin or ibuprofen (nonsteroidal anti-inflammatory drugs or NSAIDs), disopyramide (an anti-arrhythmic drug), beta-blockers (drugs normally used to prevent hypertension) and recombinant erythropoietin epoetin alfa (used to increase red blood cells). It should be stressed that no one should take measures to raise blood pressure without a clear diagnosis of NMH or without a physician's approval, since increasing blood pressure can be very dangerous in individuals with existing normal or high blood pressure. There is also no clear evidence yet that NMH is a major cause of chronic fatigue syndrome.
Treatment of low growth hormone Some studies have suggested that growth hormones may benefit some patients with fibromyalgia who show evidence of deficiencies. It stimulates the growth of muscles and bones, helps regulate metabolism, slows the production of fatty tissue, helps maintain blood sugar levels for the brain, helps regulate all other hormones and mobilizes fat, making it available to the cells as an alternative fuel. GH is associated with stage four sleep. A major spike should also occur in the middle of your "night", whenever that maybe. GH and stage 4 sleep are interdependent, like the chicken and the egg : no GH, no stage four sleep; no stage four sleep, no GH. At 3 a.m. the liver comes up and maximally detoxifies. Isn’t it interesting that the body spikes GH not long before the liver needs it ? It primes the liver. If you don’t get the priming with GH at midnight, then your liver doesn’t work and you become more toxic." (Paul Cheney, MD)
Forty-five women with fibromyalgia and low insulin-like growth factor-1 levels were enrolled in a double-blind, randomized, placebo-controlled trial of 9 months duration. Twenty-two of the women were given a dose of growth hormone at 0.0125 mg/kg daily for the first month and then the dose was adjusted, at monthly intervals, to maintain an insulin-like growth factor-1 level of about 250 ng/ml; 23 women received placebo. If there were side effects such as edema, arthralgia or carpal tunnel syndrome, the dose was reduced to 0.0125 mg/kg/day until the problem subsided. The treatment group had a significant improvement over the placebo group at 9 months in both the Fibromyalgia Impact Questionnaire score and the tender point score. Fifteen of the growth hormone group and 6 of the control group experienced global improvement. Most patients experienced improvement at the 6-month mark. After discontinuing growth hormone, patients experienced a worsening of symptoms. Carpal tunnel syndrome was more prevalent in the growth hormone group. No other adverse effects were noted. Secondary growth hormone deficiency may be responsible for some of the symptoms of fibromyalgia (Bennett, Robert M., M.D. et al, "A Randomized, Double-Blind, Placebo- Controlled Study of Growth Hormone in the Treatment of Fibromyalgia," American Journal of Medicine, 1998;104:227-231).
Treatment of infections - Antibiotic treatments : When microorganism infections are identified, these patients can be treated with antibiotic therapy. The majority of patients with confirmed pathogenic mycoplasmal infections eventually recover from 50-100% of their premorbid health on therapies that are directed specifically against their chronic infections. The recommended treatment for confirmed mycoplasmal blood infections is long-term antibiotic therapy, usually multiple 6-week cycles of doxycycline (200-300 mg/day), ciprofloxacin or Cipro (1,500 mg/day), azithromycin or Zithromax (500 mg/day) or clarithromycin or Biaxin (750-1,000 mg/day). Multiple cycles are required, because few patients recover after only a few cycles [4-6], possibly because of the intracellular locations of the infections, the slow-growing nature of these microorganisms and their inherent insensitivity to antibiotics. Dr. Nicholson recommends that patients who have been diagnosed with blood infections receive continuous oral antibiotics for at least 6 months before using the 6-week cycles of treatment (Nicolson, G.L. and Nicolson, N.L. Doxycycline treatment and Desert Storm. JAMA 1995; 273: 618-619 and Nicolson, G.L. Considerations when undergoing treatment for chronic infections found in Chronic Fatigue Syndrome, Fibromyalgia Syndrome and Gulf War Illnesses. (Part 1). Antibiotics Recommended when indicated for treatment of Gulf War Illness/CFIDS/FMS (Part 2). Intern. J. Med. 1998; 1: 115-117, 123-128). More information on antibiotic therapy can be found @ Dr. Nicolson’s web site : www.immed.org -. - Anti-viral therapies ° - Ampligen - The intravenous antiviral drug, polyl:polyC12U (Ampligen) is one of the most studied anti-CFS drugs at this time. In an analysis of studies, after 24 weeks of Ampligen therapy patients had a 31% improvement in CFS symptoms compared to a 10% improvement in patients on placebo. Patients taking Ampligen progressed from needing daily assistance of normal activities to needing assistance only once a week. However, there has been some controversy concerning the 25-year old drug, which has been studied without success for many cancers and for AIDS. ° - Valganciclovir (VGCV) or Valcyte - This is an anti-viral drug given either by vein (intravenous) or orally that was studied in a small open label trial in CFS patients. Of 25 CFS patients that were found to have elevated antibodies to the viruses EBV and HHV6. The drug was given for 6 months and 9 of 12 (75%) improved their CFS symptoms along with improvements in their blood tests. This trial was performed at Standford Univ. School of Medicine (Montoya, J. IACFS 2007). Another small phase 1 trial with valacyclovir (valtrex) or valganciclovir at the Univ. of Michigan also revealed benefits in 37 CFS patients with either EBV or CMV infections (Lerner, M. IACFS 2007). Stanford Univ. School of Medicine plans a definitive placebo controlled trial to verify these preliminary findings. - Anti fungal therapies - Although the “Yeast Over-growth Syndrome” remains controversial in medicine, we find some CFS/FMS patients improve with “anti fungal therapies” along with diet treatment. There are several anti fungal prescription medications and numerous “natural” and fungal agents available. One researcher found evidence of increased Candida albicans with an abnormal immune response in some CFS patients (Cozon, G. et al. In vivo and in vitro abnormal cellular reactivity to Candida albicans in patients with CFS. Abstract, AACFS, 2003). Nystatin - A 4 week randomized, double blind, placebo controlled trial revealed that nystatin combined with a “yeast diet” revealed overall symptom improvement in “polysymptomatic patients” (Santelmann, H et al. Effectiveness of nystatin in polysymptomatic patients. Family Practice, 2001; 18(3):258-265).
Other agents for infection - Transfer factors - Of interest is a substance called transfer factor (TF), a small protein molecule that can actually transfer immunity from an immunized mammal to a non-immune one. TF stimulates interferon, an anti-viral protein. Transfer factor with activity against specific herpes viruses (such as Immodin) may prove useful for some patients with CFS. Younger patients appear to benefit significantly more than older patients from transfer factor treatment. One study revealed improvement in CFS patients (with positive HHV-6 levels) and an therapeutic increase in NK cell levels in patients taking a colostrums/transfer factor that was specific for HHV-6 but not a general transfer factor product (Brewer, JH et al. Abstract, AACFS, 2003). - Olive leaf extract - This natural herb has demonstrated anti viral, anti fungal, anti bacterial activity and anti mycoplasma activity. It is being used by some physicians including ourselves with variable success (some appear to benefit very well, while others it does not seem to help much). - Interferon - Preliminary studies are reporting some improvement in morning stiffness and physical function when fibromyalgia patients take small doses of oral interferon-alpha, an agent used for chronic hepatitis. Oral interferon-alpha is available from Canada with a prescription – cfr. : http://www.amarbio.com/ - .
Carnitine Carnitine is essential for mitochondrial energy production. Without enough carnitine, a person’s cells can’t break down fatty acids or remove toxic wastes. - A 1994 Japanese study done at Osaka University Graduate School of Medicine showed CFS patients had an acylcarnitine deficiency (Kuratsune H et al. Acylcarnitine deficiency in chronic fatigue syndrome. Clin Infect Dis 1994 Jan;18 Suppl 1:S62-7). - A year later, a study done by AV Plioplys of Mercy Hospital and Medical Center in Chicago found CFS patients had significantly lower serum total carnitine, free carnitine and acylcarnitine levels and found a correlation between levels of total and free carnitine and symptoms (The higher the carnitine levels, the better people felt) (Plioplys AV, Plioplys S. Serum levels of carnitine in chronic fatigue syndrome : clinical correlates. Neuropsychobiology 1995;32(3):132-8). - A 1998 Japanese study found low levels of acylcarnitine in the blood of CFS and Hepatitis C patients, but not in some other diseases (Kuratsune H et al. Low levels of serum acylcarnitine in chronic fatigue syndrome and chronic hepatitis type C, but not seen in other diseases. Int J Mol Med 1998 Jul;2(1):51-6 50 and Matsumoto Y. Fibromyalgia syndrome [Article in Japanese] Nippon Rinsho 1999 Feb;57(2):364-9). A study by the same team a year later found lower levels of serum acylcarnitine in CFS patients but not in a majority of patients with fibromyalgia. - A Dutch study done by a team at the University of Nijmegen in the Netherlands in 2000 which measured the levels of total carnitine, free carnitine, acylcarnitine and carnitine esters in 25 female CFS patients and 25 healthy, matched controls found normal levels in CFS patients. (Soetekouw PM et al. Normal carnitine levels in patients with chronic fatigue syndrome. Neth J Med 2000 Jul;57(1):20-4) - One study found oral L-carnitine supplementation improved many CFS symptoms after just eight weeks of treatment.(Plioplys AV, Plioplys S. Amantadine and L-carnitine treatment of Chronic Fatigue Syndrome. Neuropsychobiology 1997;35(1):16-23).
NADH A natural antioxidant agent called nicotinamide adenine dinucleotide or NADH (Enada), is also in trials. This substance boosts serotonin and triggers adenosine triphosphate (ATP) an enzyme found in every cell that is necessary for conversion of food into energy. Typical dose is 5-10 mg per day. Take it on an empty stomach first thing in the morning (leave it by your bedside in the bottle or foil wrap with a glass of water) at least ½ hour before eating, drinking coffee/juice or taking any medication or supplements (except thyroid, which you can take with the NADH). It takes 2 months to see if it works. 15 to 20 mg a day may be more effective and is safe. Don't take vitamin C, Malic Acid, Lipoic Acid or other acids within 2 to 3 hours of NADH, as acid destroys NADH. - A small randomized, double-blind, placebo-controlled crossover study showed 31 percent of the CFS patients who got the NADH reported improvements in fatigue, decreases in other symptoms and improved overall quality of life, compared with only 8 percent of those who received a placebo. Improved symptoms continued even after 18 months. Although the study was small, these results showed promise. (L. Forsyth et al. NADH : A new therapeutic approach in chronic fatigue syndrome (CFS). Annals of AAI, 82:2, 1999). The statistical analysis of this study was subsequently challenged, however.(Colquhoun and Senn. Annals of AAI 84: 639. 2000. Cited in Goudsmit, E. Capita Selecta : http://freespace.virgin.net/david.axford/melist2.htm -) - NADH has also been shown to reduce the effects of jet lag on cognitive performance and sleepiness.( Kay GG et al. Stabilized NADH as a countermeasure for jet lag Abstract presented and published in the proceedings of the 48th International Congress of Aviation and Space Medicine, September 2000).
NT Factor NT Factor is a phospholipid/anti-oxidant nutritional combination designed to improve mitochondrial function. Dr. Nicolson reported a 33-35% reduction in fatigue severity in CFS patients with moderate levels of fatigue after 8 to 12 weeks of use (Nicolson G. IACFS 2007). He also reported positive findings in a the following journal article : (Nicolson GL, Ellithorpe E. Lipid replacement and antioxidant nutritional therapy for restoring mitochondrial function and reducing fatigue in Chronic Fatigue Syndrome and other fatiguing illnesses. J CFS 2006;13(1):57-68).
Coagulation abnormalities
Heparin- Some practitioners recommend injectable heparin to treat the hypercoagulation if found positive on specialized testing. Others feel this treatment is too risky and recommend more natural therapies such as bromelain, garlic, Nattokinase from the Japanese food “Natto” or phosphatidyl choline. Of all the natural therapies, Nattokinase appears most promising but has not yet been formally tested in CFS/FMS patients.
Other drugs
Some treatments being tried for CFS/FMS are experimental and have potentially toxic side effects and interactions with other drugs. Patients should be sure to inform their physicians of any other drugs, including so-called natural remedies, that they are taking.
Guaifenesin Dr. Amand reported improvement with guaifenesin, an agent that loosens mucus and is used in some common cough medications, but another well controlled study confirmed that its benefits were only due to placebo effects (however, this study did not eliminate salicylates as recommended by Dr. Amand)
Tropisetron Tropisetron (Navoban) is a serotonin receptor antagonist and used to reduce vomiting during chemotherapy. At 5mg per day, European studies are suggesting it may also help patients with fibromyalgia, including reducing pain, dizziness and depression and improving sleep. Gastrointestinal symptoms and headaches were the most common side effects (Haus U et al. Oral treatment of fibromyalgia with tropisetron given over 28 days : influence of functional and vegetative symptoms, psychometric parameters and pain. Scand J Rheumatol Suppl 2000; 113:55-8 and Farber L et al. Efficacy and tolerability of tropisetron in primary fibromyalgia- a highly selective and competitive 5-HT3 receptor antagonist. German Fibromylagia Study Group. Scand J Rheumatol Suppl 2000;113:49-54).
Body based therapies
Acupuncture Acupuncture may be effective for some patients. It should be noted, however, that there is some concern that it may actually intensify symptoms in certain patients. - In a data base search, 7 studies (of which 3 were randomized controlled trials and 4 were cohort studies) were evaluated for the effectiveness of acupuncture in the treatment of fibromyalgia syndrome. - Although the data are limited, evidence suggests real acupuncture is more effective than sham acupuncture for improving symptoms of patients with fibromyalgia syndrome (Berman, BM et al, "Is Acupuncture Effective in the Treatment of Fibromyalgia ?" J Family Practice, March, 1999;48(3):213-218).
Osteopathic/chiropractic manipulation Chiropractic care may also improve symptoms for some patients. In one study 21 patients improved after four weeks of spinal manipulation compared to those receiving only medications. It may be less effective, however, in older patients with severe symptoms (it should be noted that in rare cases manipulation of the neck has been known to cause stroke or damage to the arteries).
Massage therapy Massage therapy is thought to stimulate the parasympathetic nervous system, which slows down the heart and relaxes the body. Rather than causing drowsiness, massage actually increases alertness; the reduction of stress and anxiety levels and the resulting relaxation, however, do contribute to better sleep.
Other complementary & alternative treatments Because of the difficulties in treating CFS/FMS, many patients seek alternative treatments. Major analyses have indicated that mind-body therapies, such as biofeedback or hypnosis, are more effective than no treatment at all, but less effective than moderate to intense exercise. It is extremely important for patients to realize that any herbal remedy or natural medicine that has positive effects may also have negative side effects and toxic reactions, just as any conventional drug does.
Those with CFS/FM usually have deficiencies as a result of those illnesses - one study done in 2000 by Dr. Werbach suggests they are low in the B vitamins, vitamin C, magnesium, sodium, zinc, L-tryptophan, L-carnitine, coenzyme Q10 and essential fatty acids “primarily due to the illness process rather than to inadequate diets.” Werbach suggests identifying deficiencies with objective testing when possible, treating them effectively and testing again after treatment to ensure the deficiencies get resolved. But when that’s impossible, he suggests supplementing CFS patients with these nutrients, along with a general high-potency vitamin/mineral supplement, at least for a trial period. Why ? “Because it’s often difficult to rule out marginal deficiencies, because serious adverse reactions are rare and because nutritional supplements offer a therapeutic benefit,” he said in his study. In other words, it probably won’t hurt and it’s likely to help.
In our experience, many CFS/FMS patients require nutritional supplements but are “intolerant” to them and have many variable “reactions.” These must be handled carefully by an healing practitioner with experience in this area.
It should be strongly noted that alternative or natural remedies are not regulated and their quality is not publicly controlled. In addition, any substance that can affect the body's chemistry can, like any drug, produce side effects that may be harmful. Everyone is strongly advised to consult a physician before using any untested products or dietary supplements and to discuss potential interactions with any medications being taken. The following website is building a database of natural remedy brands that it tests and rates. Not all are available yet : - B Vitamins - One study found preliminary evidence of reduced functional B vitamin levels, particularly pyridoxine (B-6), in CFS patients.( Heap LC, Peters TJ, Wessely S. Vitamin B status in patients with chronic fatigue syndrome. J R Soc Med 1999 Apr;92(4):183-5) - B1 as Thiamine pyrophosphate - B12 - There are 3 forms of vitamin B12- “cyanocobalamin”, “hydroxycobalamin” and “methylcobalamin.” Our preferred form of B12 is methylcobalamin. In one preliminary trial, 2,500-5,000 mcg of vitamin B12 given by injection every two to three days led to improvement in 50-80 percent of a group of CFS patients; most improvement appeared after several weeks (Lapp CW, Cheney PR. The rationale for using high-dose cobalamin (vitamin B12). CFIDS Chronicle Physicians' Forum 1993;Fall:19-20). One small preliminary study found that CFS and FM patients had increased levels of homocysteine in their cerebrospinal fluid, which the study authors believed to be due to low levels of B-12 in the fluid.(Regland B et al. Increased concentrations of homocysteine in the cerebrospinal fluid in patients with fibromyalgia and chronic fatigue syndrome. Scand J Rheumatol (Norway) 1997, 26 (4) p301-7) This study also found a correlation between homocysteine and fatigue levels (Vitamin B12 acts with folic acid and vitamin B6 to control homocysteine levels. An excess of homocysteine may increase the risk of heart disease, stroke and perhaps osteoporosis and Alzheimer’s disease). Dr. Britt Ahlrot-Westerlund from Sweden has had success treating CFS and FM with methylcobalamin. She uses it conjunction with folic acid, Vitamin B6 and antioxidants. - Branched-Chained Amino Acids (Valine, leucine, and isoleucine) - It is hypothesized that a deficiency of BCAAs may play a role in the pathophysiology of FM since these amino acids supply energy to the muscle and supplementation may be beneficial (Maes M et al. Serotonergic markers and lowered plasma branched-chain-amino acid concentrations in fibromyalgia. Psychiatry Res 2000;97:11-20) - Vitamin C - Vitamin C mobilizes your body's self-defense mechanisms that assist your immune system in overcoming disease. It is also a powerful antioxidant required to produce collagen, the main supportive protein in cartilage, tendon and connective tissue. A potent antioxidant, Vitamin C is also credited with destroying or minimizing the effects of free radicals and carcinogens. Although most animals manufacture their own vitamin C — on average, a 150-pound animal produces 4,000 to 13,000 mg. of vitamin C daily— human beings are among only a handful of animals that do not. For those CFS patients with low blood pressure and low blood volume, the form of vitamin C caused "Sodium Ascorbate" may be the preferred form. An interesting 1996 Japanese study showed that CFS patients improved after taking intravenous infusions of vitamin C and DHEA (Kodama M et al. The value of the dehydroepiandrosterone-annexed vitamin C infusion treatment in the clinical control of chronic fatigue syndrome (CFS). In Vivo 1996 Nov-Dec;10(6):585-96). In Dr. Jesse Stoff’s study of 1,357 patients, which he treated using 1000 mg of vitamin C three times daily and Biomune OSF, an immune-modulating substance, he claimed 88 percent of those who had one detected viral infection improved within one year. Those with multiple infections improved at roughly half that rate (Chronic Fatigue Complex Natural Health Consultants, available at : http://www.naturalhealthconsult.com/fatigue.html -). - Chlorella - In 55 subjects with fibromyalgia, 33 with hypertension and 9 with ulcerative colitis who participated in a double-blind, placebo-controlled, randomized trial, subjects took 10 g of pure chlorella in tablet form and 100 ml of a liquid which contained a chlorella extract each day for 2 or 3 months. Results showed reductions in blood pressure and serum cholesterol levels, enhanced wound healing and immune function, improved sleep and reduced anxiety levels in fibromyalgia patients and a decline in the Disease Activity Index for ulcerative colitis symptoms (Merchant RE, Andre CA. A Review of Recent Clinical Trials of the Nutritional Supplement Chlorella pyrenoidosa in the Treatment of Fibromyalgia, Hypertension and Ulcerative Colitis,, Altern Ther Health Med, May/June 2001;7(3):79-91.) - Collagen Hydrolysat - In one 2000 study collagen hydrolysat, a food supplement, significantly decreased pain in fibromyalgia patients with accompanying temporomandibular joint problems. - CoQ 10- Low - CoQ10 levels have been found in one small study on CFS patients and further decreased after exercise that did not resume to baseline after overnight rest. Exercise intolerance improved after supplementation with 100mg/d (Judy W. Coenzyme Q10. Presentated at Am College of Nutrition 37th Annual Conference, 1996). - Vitamin D - Vitamin D is very important for proper immune function and levels were found to be deficient in roughly 20% of patients with CFS/FMS (Wynants H & Moorkens, G. Magnesium and Vitamin D status in female patients with CFS, fibromyalgia or autonomic dysfunction. Abstract, AACFS, 2003). - Essential fatty acids (Gamma Linoleic Acid) - A double-blind placebo controlled trial of long chain essential fatty acid supplementation produced improvement in the majority of CFS patients. (Behan Po et al. Effect of high doses of essential fatty acids on the post viral fatigue syndrome. Acta Neurol Scand 82:209-216, 1990). - Glutathione - A potent antioxidant, glutathione eliminates free radicals, detoxifies and removes heavy metals like lead, mercury and cadmium from the body, recycles oxidized vitamin C back to useful vitamin C and protects cells from damage from oxidative stress. Unfortunately, oral glutathione does not pas the digestive tract even taken in massive oral doses and either intra-muscular or intravenous routes are required. Glutathione levels have been found to be low in CFS patients ((Kennedy, G et al. Increased plasma isoprotanes and other markers of oxidative stress in chronic fatigue syndrome. Abstract, AACFS, 2003). A healthy person produces several grams of glutathione daily. Dr. Patricia Salvato of Houston, Texas, recommends intramuscular injections of glutathione. Some CFS patients have taken 100 mg. glutathione combined with 1 mg. of ATP injections twice weekly with good results (in a study of 276 CFIDS patients —218 women and 58 men— who received weekly injections of glutathione/ATP injections, 82 percent (226 patients) reported less fatigue and 196 experienced improvement in memory and concentration, while 171 experienced lower levels of pain; a few patients had heart palpitations thought to have come from the ATP). It may help to take magnesium and glutathione together : in a high-quality study in Belgium, patients who were magnesium deficient (47 percent) had significantly lower total antioxidant capacity in their blood. Magnesium deficient patients whose magnesium stores didn’t improve even after oral supplementation with 10 mg magnesium per day also had persistently lower blood glutathione levels.(40). - NAC (N-Acetyl -L -Cysteine) may naturally increase glutathione levels in the body. Whey protein products have also shown to increase glutathione levels (see below for more information on whey). - Hyperbaric oxygen therapy (HBOT) - One small study of 29 patients with CFS (15 of which were infected with Mycoplasma species) revealed reduced fatigue, increased levels of activity and an improved reaction time along with improved quality of life, functional status (Van Hoof E., De Meirleir K. Hyperbaric Therapy in Chronic Fatigue Syndrome. J CFS 11(3): 37-49). - Licorice (glycyrrhiza glabra) – Augments adrenal hormones with mineralcorticoid activity and potentiates glucocorticoid activity (it helps hold onto salt and blood volume and increased cortisol activity in the body). (Baschetti R. Chronic fatigue syndrome and liquorice. N Z Med J. 108:156-7,259, 1995). - Magnesium - Magnesium deficiency can cause dysregulation of the immune and autonomic nervous systems and clinical or experimental magnesium deficiency produces fatigue, depression, poor exercise tolerance and decreased resistance to psychological stress. Ideal dose to reach for is 500-750 mg of magnesium/day- the number one side effect of large doses is loose stools/diarrhea. One case control study of 18 CFS patients matched with 20 healthy controls revealed significantly lower RBC magnesium levels. 32 patients were randomly assigned to receive intra-muscular Mg sulfate weekly or placebo. RBC magnesium levels normalized with treatment as did improvement scores. (Cox JM et al. Red blood cell magnesium and chronic fatigue syndrome. Lancet 337:757-60, 1991). A study in Paris found a link between magnesium deficiency, chronic fatigue syndrome and mitral valve prolapse (MVP), an abnormality in which the valve between the heart’s left atrium and ventricle malfunctions or is weakened and blood cannot circulate through the heart in the way it should. As many as 75 percent of those with fibromyalgia have MVP. (Durlach J et al. Neurotic, neuromuscular and autonomic nervous form of magnesium imbalance. Magnes Res 1997 Jun;10(2):169-95). 24% of CFS patients, 27% of FMS patients and 53% of patients with autonomic dysfunction had low magnesium levels (Wynants H & Moorkens, G. Magnesium and Vitamin D status in female patients with CFS, fibromyalgia or autonomic dysfunction. Abstract, AACFS, 2003). The specific form of magnesium called “magnesium malate” was found helpful in FMS patients (Abraham GE, Flechas JD. Rationale for the use of magnesium and malic acid in fibromyalgia treatment. Journal of Nutritional Medicine, 1992, 3:40-52). In 21 female and 3 male patients (mean age of 49 years) with fibromyalgia compared with 16 female and 2 male subjects (mean age of 50 years), participants consumed 200 mg of malic acid and 50 mg of magnesium in tablet form at a dose of 3 tablets, 2 times a day, compared with a placebo for 4 weeks/course, followed by a 6-month, open-label trial escalating up to 6 tablets, 2 times a day. There was shown no clear benefit of malic acid supplementation in the low-dose trial. With escalating doses and a longer duration of treatment in the open-label trial, there were significant reductions in the severity of all 3 primary pain/tenderness measures. Malic acid and magnesium may help with carbohydrate metabolism, which could lead to increased production of ATP. Enhanced energy production through ATP may help improve muscle tender points. (Russell IJ, Michalek JE, Flechas JD, Abraham GE "Treatment of Fibromyalgia Syndrome With Super Malic : A Randomized, Double Blind, Placebo Controlled, Crossover Pilot Study,", J Rheumatol, 1995;22(5):953-958). - Magnet therapy - Magnet therapy has received some attention. One study using magnets that were only slightly more powerful than refrigerator magnets showed some benefits, although there is no strong evidence to confirm their benefits. - Melatonin - Melatonin is a natural hormone associated with the sleep-wake cycles may have benefits for some patients with fibromyalgia. - MSM - MSM may be effective for the treatment of allergy, pain syndromes, athletic injuries and bladder disorders. 6-20 grams/day. - Mud pack treatments - One 1999 Italian study suggested that taking an antidepressant and undergoing mud-pack treatment may release natural steroids that reduce inflammation and relieve pain. Further research is needed to confirm any benefits. - Phosphatidyl Serine (PS) - Phosphatidylserine (PS) is vital to brain cell structure and function and plays an important role in the brain’s neurotransmitter systems, metabolism and maintaining nerve connections. This natural hormone supports communication between brain cells and promotes improved memory function. Typical doses are 100-300mg or more per day. - S-adenosylmethionine (SAMe) - SAMe is a natural substance that has antidepressant, anti-inflammatory and analgesic properties. It has shown some benefit in controlled studies. SAMe is a methyl donor in many methylation reactions that occur in the brain. Thirty patients with secondary fibromyalgia syndrome in a double-blind protocol were given 400 mg/day of SAMe or a placebo for 15 days by intravenous injection. All 30 patients completed the study. There was a significant decrease in pain. The scores for both the Hamilton and SAD tests decreased significantly after SAMe therapy. SAMe may be a good candidate for the treatment of secondary fibromyalgia syndrome. (Tavoni, A., MD et al, "Evaluation of S-Adenosylmethionine in Secondary Fibromyalgia : A Double-Blind Study," Clinical and Experimental Rheumatology, 1998:106-107). - Whey Protein (Undenatured) - The Physician Desk Reference (PDR) states the following properties to whey protein : support gastrointestinal health, promotes repair of RNA and DNA, promotes removal of toxic metals from the body, aids in wound healing, supports production of hemoglobin, enzymes and antibodies and creation of new muscle mass. These effects make whey protein supplementation attractive for the CFS patient. One unpublished study demonstrated an undenatured whey protein (ImmunoPro) significantly increased NK cell function in CFS patient’s blood samples (Herst C et al. The ex vivo effects of ImmunPro on the induction of natural killer cells in patients with chronic fatigue syndrome. Unpublished) Another unpublished study revealed HHV-6 reduction in CFS patients taking whey protein (ImmunoPro) and in combination with the drug foscarnet lowered high levels of HHV-6 in CFS patients (Abrahams, M. In vitro study of the efficacy of ImmunoPro and foscarnet in eliminating the infectivity of HHV-6A. Unpublished, 2003).
Psychological therapies - Cognitive-behavioral therapy - Studies continue to show that when CFS/FMS patients increase their psychological capacity to deal with the specific conditions of their disorder and their lives, they are more apt to experience physical improvement. Cognitive-behavioral therapy is an effective method for enhancing patients' belief in their own abilities and to develop methods for dealing with stressful situations.
° - The goals of cognitive-behavioral therapy The primary goals of cognitive-behavioral therapy are to change any distorted perceptions that individuals have of the world and of themselves and to change their behavior accordingly. Using specific tasks and self-observation, patients gradually shift their fixed ideas that they are helpless against the pain that dominates their lives to the perception that pain is only one negative factor and, to a degree, a manageable experience among many positive ones.
Cognitive therapy is particularly helpful in defining and setting limits, behavior that is extremely important for these patients. Many fibromyalgia patients live their lives in extremes. They first become heroes or martyrs, doggedly pushing themselves past the point of endurance until they collapse and withdraw. This inevitable backlash reverses their self-perception and they then view themselves as complete failures, unable to cope with the simplest task. One important aim of cognitive therapy is to help such patients discover a middle route, whereby they can prioritize their responsibilities and drop some of the less important tasks or delegate them to others. Such behavior will eventually lead to a more manageable life and to less of an absolutist perspective on themselves and others.
° - The procedure Cognitive therapy may be expensive and not covered by insurance, although it is usually of short duration, typically six to 20 one-hour sessions. Patients are also given homework, which usually includes keeping a diary and attempting tasks that they have avoided because of negative thinking. A typical cognitive therapy program may involve the following measures : . Keep a diary - The patient is almost always asked to keep a diary, an it is usually a key component of cognitive therapy. The diary serves as a general guide for setting limits and planning activities. The patient uses the diary to track any stress factors, such as a job or a relationship, that may be making the pain worse or better. . Confront negative or discouraging thoughts - Patients are taught to challenge and reverse negative beliefs ("eg, I'm not good enough to control this disease, so I'm a total failure") to using coping statements ("Where is the evidence that I can control this disease ?") . Set limits - Limits are designed to keep both mental and physical stress within a manageable framework so that patients do not get discouraged by forcing themselves into situations in which they are likely to fail. For example, tasks are broken down into incremental steps and patients focus on one at a time. . Seek out pleasurable activities - List a number of enjoyable low-energy activities that can be conveniently scheduled. . Prioritize - Patients learn to drop some of the less critical tasks or delegate them to others. . Accept relapses - Over-coping and accomplishing too much too soon can often cause a relapse of symptoms. Patients should respect these relapses and back off. They should not consider them a sign of treatment- or self-failure.
Cognitive therapy may be expensive and not covered by insurance. An alternative that may be as beneficial for some patients are strong, intelligently managed support groups. In one center, educational discussion groups were as effective or even more so, than a cognitive therapy program. Such results cannot necessarily be applied to all centers, of course. Therapeutic success varies widely depending on the skill of the therapist.
Other resource information for CFS/FM
Organizations
International Association for Chronic Fatigue Syndrome/Myalgic Encephalothy Website :http://www.IACFS.net - Formed by health professionals to promote dissemination of information on CFS.
American Association of Medical Acupuncture 5820 Wilshire Blvd., Suite 500, Los Angeles, CA 90036. On the internet : http://www.medicalacupuncture.org - This organization will provide information about physician acupuncturists in particular areas.
American Chronic Pain Association P.O. Box 850, Rocklin, CA 95677. Call (916) 632-0922 or on the Internet :
Centers for Disease Control and Prevention, Division of Viral Diseases Building 6, Rm. 120, Atlanta, GA 30333. Call (404-332-4555) or on the Internet :
The Chronic Fatigue and Immune Dysfunction Syndrome Association of America PO Box 220398, Charlotte, NC 28222-0398. Call (800-44-CFIDS or 442-3437) or on the Internet :
Fibromyalgia Network PO Box 31750, Tucson, AZ 85751-1750 - Call (800-853-2929) or on the Internet :
http://www.fmnetnews.com/ - The FM Network offers information on support groups and health care specialists by area. Their web site has useful advice and information.
International Association for the Study of Pain 909 NE 43rd St., Suite 306, Seattle, WA 98105-6020. Call (206-547-6409) or on the Internet :
National Arthritis and Musculoskeletal and Skin Diseases, Information Clearinghouse (NAMSIC) NIH, 1 AMS Circle, Bethesda, MD 20892-3675 - Call (301-495-4484) or on the Internet :
National Chronic Fatigue Syndrome and Fibromyalgia Association PO Box 18426, Kansas City, MO 64133. Call (816-313-2000) - This organization is a good source of accurate information on CFS. Send self-addressed envelope for information. They will return phone calls using a collect call.
National Chronic Pain Outreach Association 7979 Old Georgetown Road, Suite 100, Bethesda, MD 20814-2429. Call (301) 652-4948 or on the internet :
National Institute of Allergy and Infectious Diseases (NIAID) Office of Communications, Building 31, Rm. 7A50, 31 Center Dr., MSC 2520, Bethesda, MD 20892-2520. Write for the publication Chronic Fatigue Syndrome, NIH Publication No. 96-484 or on the Internet :
http://www.consumerlab.com - Provides research on the quality of herbal products and dietary supplements.
MEDWATCH Medwatch is a Food and Drug Administration program called for people to report adverse reactions to medical products, including drugs, herbal remedies and vitamins - Call 800-332-1088.
From Fatigue to Fantastic Dr. Tietelbaum’s – Internet :
“Al in het eerste gesprek maken we onze patiënten duidelijk dat die scheiding tussen lichaam en geest voor ons niet bestaat.”
Achthonderd meter in één uur tien
Simon Knepper - AMC Magazine, 27-03-07
Bij kinderen met chronische, onverklaarde pijnklachten schieten de traditionele geneeskundige uitgangspunten tekort. ‘Pijn zit niet óf in het lichaam óf tussen de oren.’ De integrale aanpak van de Psychiatric Medical Unit, onlangs begunstigd met een zorgvernieuwingsbijdrage van verzekeraar Agis, voorkomt een hulpeloos afglijden naar kluizenaarschap en invaliditeit.
Neem Hugo van der Pas - de naam is gefingeerd, de jongen echt. Brugklassertje van bijna dertien, kwam vorige week met zijn vader en moeder langs voor een kennismakingsgesprek. Hugo’s ouders beschrijven hun zoon als ‘een soort zombie’. Hij beweegt zich moeizaam en hoewel hij zegt ’s nachts goed te slapen, heeft hij diepe wallen onder zijn ogen. Omdat hij altijd moe is en vaak hoofd- of buikpijn heeft, is Hugo al ruim een half jaar niet naar school geweest. Ook op straat komt hij nauwelijks meer. Anderhalve maand geleden, toen het even wat beter leek te gaan, werd hij door zijn moeder nog een keer meegenomen naar het naburige winkelcentrum. Een wandeling van nauwelijks achthonderd meter, waar hij één uur en tien minuten voor nodig had. Bij thuiskomst was Hugo lijkbleek en totaal uitgeput. ‘Hij heeft veertien dagen op de bank gelegen om bij te komen’, vertelt AMC-kinderarts Bert Derkx. Samen met kinder- en jeugdpsychiater Anne Pauline Cohen nam Derkx enkele jaren geleden het initiatief voor wat inmiddels de ‘Psy Med Unit’ heet : een samenwerkingsverband van het Emma Kinderziekenhuis AMC en het academisch centrum voor kinder- en jeugdpsychiatrie De Bascule. De kinderarts wijst op het voor hem liggende dossier, waarin Hugo’s martelgang van de afgelopen vijf jaar staat opgetekend : ‘Deze jongen heeft tientallen consulten achter de rug, bij de huisarts, bij kinderartsen, neurologen, psychotherapeuten, een psychiater, een homeopaat en een iriscopist. Niemand kon iets bruikbaars vinden. Hugo is onder de MRI-scan geweest, zijn blindedarm is verwijderd en hij onderging driemaal een kijkoperatie. We zagen hier een totaal geïnvalideerd en geïsoleerd kind.’
Het geval-Van der Pas staat niet op zichzelf. Jaarlijks ontfermt de Psy Med Unit zich over ruim veertig patiënten, deels met vergelijkbaar ernstige problemen. De vele malen grotere behandelvraag doet vermoeden dat Nederland zeker een paar honderd Hugo van der Passen telt. Allemaal kinderen wier leven is vastgelopen door ‘functionele klachten’ : vormen van chronisch verstoord lichamelijk functioneren waarvoor geen lichamelijke oorzaak te vinden is. ‘Het begint vaak met een paar weken buik- of hoofdpijn waar de huisarts weinig van kan maken’, legt Derkx uit : ‘De meeste ouders en kinderen kunnen daar goed mee leven en bij die groep zullen de klachten meestal ook weer overgaan. Maar een klein percentage wordt ongerust. Verstaat die dokter zijn vak wel ? Waarom vindt hij dan niets ? En dan zie je steeds dezelfde mechanismen optreden. De arts wil het gezin geruststellen, dus hij vraagt nader onderzoek aan. Vervolgens verwijst hij het kind naar de specialist, die evenmin iets vindt en het opnieuw doorverwijst en zo verder. Met als gevolg dat zo’n gezin steeds meer wordt gesterkt in de overtuiging dat er iets ernstigs aan de hand is. Anders zou er toch niet zo grondig worden gespeurd ?‘
Ver doorgevoerde aanstellerij
Gaandeweg kunnen kind en ouders op die manier terechtkomen in een uitzichtloze spiraal van angst, depressie en pijnklachten. Anne Pauline Cohen : ‘Oorzaak en gevolg zijn al gauw niet meer te ontwarren, in het ernstigste geval raakt het gezinsleven volledig ontwricht. Je ziet ouders overspannen worden en soms zelfs hun baan opzeggen om beter voor hun kind te kunnen zorgen. En inmiddels moeten ze dan opboksen tegen een omgeving die de hele ziektegeschiedenis voor ver doorgevoerde aanstellerij houdt.’
De Psychiatric Medical Unit is in het leven geroepen vanuit de overtuiging dat de traditionele geneeskundige uitgangspunten bij deze categorie patiënten niet voldoen. ‘De veronderstelde dualiteit van lichaam en geest zit ons nog steeds in de weg’, aldus Cohen : ‘Dat wreekt zich bij een patiëntengroep als deze. Medici zijn gespitst op het stellen van een diagnose, op het vinden van een lichamelijke dan wel geestelijke oorzaak. Als de somatische geneeskunde niks vindt, wordt het probleem verplaatst naar psychologische of psychiatrische hulpverleners. Ah, denken de patiënt-met-buikpijn en diens ouders dan, ze vinden dat het tussen de oren zit. Misschien geloven ze wel dat er iets in ons gezin niet deugt, daar gaan we niet in mee. Op naar de volgende dokter !’
Uitgangspunt van de Psy Med Unit is dat de verwevenheid van lichamelijke en psychische problemen bij onverklaarde klachten vraagt om een volledig geïntegreerde aanpak. Kinderartsen, psychotherapeuten, kinder- en jeugdpsychiaters en sociaal psychiatrisch verpleegkundigen trekken daarom al vanaf de ‘intake’ samen op. Met onmiskenbaar succes : ruim driekwart van de groep met ernstige problemen slaagt erin binnen een half jaar het gewone leven weer op te pakken. Cohen : ‘Al in het eerste gesprek maken we onze patiënten duidelijk dat die scheiding tussen lichaam en geest voor ons niet bestaat. Geen lichamelijke afwijking betekent niet dat het “dus” psychisch is. Vervolgens vertellen we dat we niet knapper zijn dan al die andere dokters die ze voorbij hebben zien trekken. We zijn niet uit op een diagnose en pretenderen ook niet dé oorzaak van de klachten aan te pakken. Wel de gevolgen. Met cognitief gedragstherapeutische methoden helpen we kind en ouders om steeds minder door de klachten geleefd te worden.’
Kapitein op eigen schip
De patiënten in kwestie hebben gemeen dat ze het gevoel van sturing over eigen lijf en leden kwijt zijn. Daarom is de behandeling er allereerst op gericht weer ‘kapitein op eigen schip’ te worden. Derkx : ‘Eerst bepaal je samen de behandeldoelen. Jij wilt weer naar school ? Goed, dan gaan we samen kijken wat daar voor nodig is. Stap twee is het werken aan cognities. Wat voor gedachten heb je over die moeheid, over die buikpijn ? Ben je bang dat er een ernstige aandoening achter zit ? Door middel van gesprekken, ontspanningstechnieken en zelfobservatie leren we de kinderen stapje voor stapje de gewone dingen weer op te pakken. Tien tegen één dat je dan ook de pijn en de stress steeds meer naar de achtergrond ziet verdwijnen.’
Ook het gedrag van de ouders wordt in de behandeling betrokken. Cohen : ‘Ouders zijn geneigd om hun kind alle aandacht te geven op het moment dat de klachten zich aandienen. Dat kan voor iedereen nadelig uitpakken. Een van de dingen die wij ze leren is het gezinsleven niet meer door de klachten te laten verlammen. Een kind met pijn kun je óók naar zijn kamer laten gaan, om afleiding te zoeken bij zijn gamecube of Donald Ducks, in plaats van hem middenin de huiskamer passief op de bank te laten liggen. Dat scheelt vaak al een flinke dosis gezins-stress.’
Ondanks de behandelresultaten geniet de Psy Med Unit nog maar weinig bekendheid. Logisch, volgens Derkx, want aan het bestaan van de unit is de afgelopen jaren nauwelijks ruchtbaarheid gegeven : ‘De moeilijkheid is dat we met de huidige menskracht maar één nieuwe patiënt per week kunnen behandelen. Wekelijks moesten we er tot dusver vijf tot zes afwijzen.’
Maar nu zorgverzekeraar Agis met een financiële bijdrage over de brug komt, achten Cohen en Derkx de tijd rijp om wat uitbundiger aan de weg te timmeren.
Waarom die subsidie niet al jaren eerder is binnengesleept ? Vanwege een hardnekkige misvatting, meent het behandelduo. Derkx : ‘De kosten van zo’n integrale aanpak worden gauw overschat. Lichamelijk onderzoek doen we bij onze patiënten nauwelijks, dat scheelt al een slok op een borrel. Maar wat blijkbaar ook slechts moeizaam doordringt : een deel van deze kinderen wordt op den duur volledig zorgafhankelijk. Vroegtijdig ingrijpen bespaart niet alleen veel nodeloze ellende, maar ook sloten geld.’
Abstract This study aimed at examining whether physiological exercise variables at the submaximal level, defined as 75% of the age-predicted target heart rate, are able to predict peak exercise performance in women with chronic fatigue syndrome (CFS) (n = 222). Subjects performed a bicycle ergometric test against a graded increase in workload until exhaustion with continuous monitoring of electrocardiographic and ventilatory variables. Oxygen uptake at the submaximal level (VO2SUBMAX) correlated strongly with peak oxygen uptake (VO2PEAK) (r = 0.70). For the prediction of VO2PEAK, linear regression analysis determined the line of best fit as : VO2PEAK=0.95×VO2SUBMAX+372.3 Using this equation, the mean error in the prediction was 14.6 ± 11.2% (range 0.1–63.7%). It is concluded that the prediction of VO2PEAK based on VO2SUBMAX might be useful for analyzing group differences or treatment effects but not for individual (clinical) purposes.
Introduction Chronic fatigue syndrome (CFS) is a debilitating disorder characterized by debilitating fatigue, widespread musculoskeletal pain, sleep impairments, headache and symptoms of poor concentration and memory (1). Maximal or peak exercise performance testing is widely used for the assessment of people with CFS and it appears to be both reproducible and valid (2). Peak exercise capacity variables correlate with activity limitations and participation restrictions (3), supporting the clinical importance of peak exercise testing in individuals with CFS. However, the role of maximal exercise tests is limited in people whose performance may be limited because of pain or fatigue rather than exertion (4). In CFS, symptoms are typically made worse after a peak exercise stress test (5,6) and a delayed recovery from exercise appears characteristic of the disorder (7). Therefore, a submaximal exercise test appropriate for CFS patients would have a number of advantages over a test performed until exhaustion: submaximal testing is likely to diminish symptom exacerbations following peak exercise testing (8) and consequently, decrease recovery time; it may encourage more severely disabled people with CFS to participate in research studies using exercise testing (8); and it has greater (clinical) applicability (for instance, to physical therapists) (4). The Aerobic Power Index Test has been used as a submaximal test in people with CFS: the test-retest reliability has been established (9) and it was the first submaximal test able to replicate previous findings of decreased exercise performance in CFS cases compared to healthy controls (8). However, there are currently no published data indicating that a submaximal exercise test is able to predict peak exercise performance in CFS patients. Prediction of peak aerobic capacity is one of the primary goals of submaximal exercise testing (4). Therefore, the present study aimed at examining whether physiological exercise data corresponding to a submaximal level, defined as 75% of the age-predicted target heart rate (8), are able to predict peak exercise performance in women with CFS.
Materials and Methods
Patient Recruitment and Research Design - The exercise capacity testing data of all women with CFS attending our university-based Chronic Fatigue Clinic between November 2003 and December 2005 were reanalyzed. The study focused on women to preclude bias originating from pooling of gender data (10). All participants fulfilled the Centers for Disease Control and Prevention criteria for CFS (1). Therefore, all patients underwent an extensive medical evaluation prior to exercise testing (for more details regarding the diagnostic strategies as applied in the present study the reader is referred to Reference 11). To be selected for data analyses, women had to be within the age range of 18e65 years at the time of exercise testing. Accordingly, 222 women with CFS were selected. The mean age was 38.6 p/m 9.8 years (range : 18-61 years) and the mean illness duration was 6.2 p/m 6.4 years (range : 1-31 years). The study protocol was approved by the local ethics committee (Academic Hospital Vrije Universiteit Brussel; O.G. 016).
Exercise Testing - The participants performed a bicycle ergometric test against a graded increase in workload until exhaustion was reached (12). There was continuous monitoring of electrocardiographic and ventilatory variables. In order to obtain an optimal test duration of 8-12 min (13), subjects started the test at 10 W, with an increase of 10 W/min (12). The age-predicted peak heart rate (HRPEAK) was calculated as 220 minus the subject's age in years (14). For a detailed description of the exercise test as applied in the present study, the reader is referred to Reference 15.
Statistical Analysis- All data were analyzed using SPSS 14.0 for Windows (SPSS Inc., Chicago, IL). A one-sample Kolmogorov-Smirnov (K-S) goodness-of-fit test was used to examine whether the variables were normally distributed. In case of normality, the associations between the submaximal and peak exercise performance data were analyzed using Pearson product-moment correlation analysis. If a variable was not normally distributed, then a Spearman correlation analysis was applied. If certain submaximal exercise performance variables correlated strongly with their corresponding peak variables, then a linear regression analysis was performed for constructing a regression equation for the prediction of the peak exercise performance. Accuracy of the prediction was determined using the coefficient of determi- nation (r^2), the standard error of the estimate (SEE) and the mean error or 'the mean absolute percentage deviation' counted as predicted peak value measured peak value/predicted peak value. Significance level was set at 0.01 to help protect against potential type I errors.
Results Of the 222 study participants, only 156 (71%) achieved the submaximal level (defined as 75% of the age-predicted tar- get heart rate) and were used for further data analysis. The descriptive statistics of the exercise testing variables are presented in Table 1. In addition to the peak ( p=0.045) and submaximal work capacity attained p=0.025), all variables were normally distributed. The outcome of the correlation analysis is presented in Table 2. Oxygen uptake at the submaximal level (VO2_SUBMAX) correlated strongly with peak oxygen uptake (VO2_PEAK) (r=0.70; F=151.2; df=154; p<0.001). For the prediction of VO2PEAK, linear regression analysis determined the line of best fit as : VO_2PEAK=0.95 x VO_2SUBMAX + 372.3 where both VO_2PEAK and VO_2SUBMAX are in mL/min. Using this equation, the mean error in the prediction was 14.6 p/m 11.2% (range 0.1-63.7%; r^2=.49; SEE=224.4) when compared with measured VO_2PEAK. Likewise, the body weighted-adjusted VO_2SUBMAX correlated strongly with the body weight-adjusted VO_2PEAK (r=0.69; F=144.7; df=154; p<0.001). For the prediction of body-weight adjusted VO_2PEAK, linear regression analysis determined the line of best fit as : VO_2PEAK=0.98 x VO_2SUBMAX + 5.47 where both VO_2PEAK and VO_2SUBMAX are given in mL/kg per min. Using this equation, the mean error in the prediction was 14.6 p/m 10.9% (range 0.1-66.6%; r^2=.48; SEE=3.59) when compared with measured VO_2PEAK. The remaining correlations between variables at the submaximal and peak level were lower and were therefore not entered in a regression analysis.
Discussion There is a need for standardized submaximal ergometer tests not only for patients with CFS but for people with various disorders that require close monitoring during exercise (4). Therefore, the present study aimed at examining whether a standardized submaximal ergometer test was able to predict peak exercise performance (including peak aerobic work capacity) in people with CFS. We utilized an exercise protocol (starting at 10 W with an increase of 10 W/min) that has previously been used for the assessment of peak exercise performance in people with CFS (3,11,12,15,16) and defined the submaximal level in accordance with the Aerobic Power Index Test (8,9). The results of the study suggest that exercise variables at the submaximal level are strongly associated with their corresponding variables at the peak (maximal) level. Despite this observation, the associations appeared too weak to predict peak exercise variables with an error margin <10%. Both VO_2PEAK and body weight-adjusted VO_2PEAK can be predicted from their corresponding submaximal variable with an error margin of 14.6%. For analyzing group differences or treatment effects (research purposes), an error margin of 14.6% might be acceptable and can be taken into account in an a priori power calculation. However, for individual (clinical) purposes, the error range (0.1->60%) should be taken into account. It is therefore concluded that, for clinical purposes, the submaximal exercise testing protocol used here is unable to make an accurate prediction of peak exercise performance in women with CFS. The results should be interpreted in light of the study limitations. Only 71% of the subjects studied here attained the submaximal exercise level, defined as 75% of the age-predicted target heart rate. Thus, the results (and the regression equations) are applicable solely to women attending a specialized chronic fatigue clinic and able to achieve 75% of the age-predicted target heart rate during graded exercise tests. This limits the external validity of the results. Further studies are warranted, for instance, by using the exercise protocol of the Aerobic Power Index Test (an increase of 25 W every minute) or by applying other exercise testing protocols previously used for studying peak exercise performance in people with CFS. Fulcher and White used a treadmill walking test at a constant speed of 5 kph and a gradient increase of 2.5% every 2 min (17). Sargent et al. applied cycle ergometry starting at 0 W with incrementing the power output by 25 W every 2 min (10). Bazelmans and colleagues applied an individually tailored bicycle ergometer test: the workload was increased every minute in steps of 10% of estimated maximal workload (5). In summary, the results of the study suggest that exercise variables at the submaximal level are strongly associated with their corresponding variables at the peak level in women with CFS. VO2PEAK and body weight-adjusted VO_2PEAK can be predicted from their corresponding submaximal variable with a mean error margin of 14.6%, which might be acceptable for analyzing group differences or treatment effects. For individual (clinical) purposes, the submaximal exercise testing protocol was found inappropriate for predicting peak exercise performance in women with CFS.
Table 2. - Correlation analysis between the variables at the submaximal and peak level (n=156) ------------------------------------------------------------------------------------ VariablePearson correlation coefficientp value ------------------------------------------------------------------------------------ Submaximal vs. peak exercise duration 0.58 <0.001 Submaximal vs. peak HR 0.43 <0.001 Submaximal vs. peak RER 0.69 <0.001 Submaximal vs. peak workload 0.63^a <0.001^a Submaximal vs. peak VO2 0.70 <0.001 Submaximal vs. peak body weight adjusted VO2 0.69 <0.001
Fukuda K, Strauss SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A - The Chronic Fatigue Syndrome - A comprehensive approach to its definition and study - Ann Intern Med 1994;121:953-959.
Manu P, Affleck G, Tennen H, Morse PA, Escobar JI – Hypochondriasis influences quality-of-life outcomes in patients with chronic fatigue syndrome - Psychother Psychosom 1996;65:76-81.
Nijs J, De Meirleir K, Wolfs S, Duquet W - Disability evaluation in chronic fatigue syndrome - Associations between exercise capacity and activity limitations/participation restrictions – Clin Rehabil 2004;18:139-148.
Noonan V, Dean E - Submaximal exercise testing - Clinical application and interpretation - Phys Ther 2000;80:782-807.
Bazelmans E, Bleijenberg, Voeten MJM, van der Meer JWM, Folgering H - Impact of a maximal exercise test on symptoms and activity in chronic fatigue syndrome - J Psychosom Res 2005;59:201-208.
Lapp CW - Exercise limits in chronic fatigue syndrome - Am J Med 1997;103:83.
Paul L, Wood L, Behan WMH, Maclaren WM - Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome - Eur J Neurol 1999;6:63-69.
Wallman KE, Morton AR, Goodman C, Grove R – Physiological responses during a submaximal cycle test in chronic fatigue syndrome - Med Sci Sports Exerc 2004;36:1682-1688.
Wallman K, Goodman C, Morton A, Grove R, Dawson B – Test-retest reliability of the Aerobic Power Index Test in patients with chronic fatigue syndrome - J Chronic Fatigue Syndr 2003;11:19-32.
Sargent C, Scroop GC, Nemeth PM, Burnet RB, Buckley JD – Maximal oxygen uptake and lactate metabolism are normal in chronic fatigue syndrome - Med Sci Sports Exerc 2002;34:51-56.
Nijs J, Meeus M, McGregor NR, Meeusen R, De Schutter G, Van Hoof E et al. - Chronic fatigue syndrome - Exercise performance related to immune dysfunction - Med Sci Sports Exerc 2005;37:1647-1654.
De Becker P, Roeykens J, Reynders M, McGregor N, De Meirleir K - Exercise capacity in chronic fatigue syndrome - Arch Intern Med 2000;160:3270-3277.
Davis JA - Direct determination of aerobic power – In : Maud PJ, Foster C eds. - Physiological Assessment of Human Fitness - Champaign, IL : Human Kinetics;1995. pp. 9-17.
Astrand PO, Rodahl K - Evaluation of physical performance in the basis of tests – In : Astrand PO, Rodahl K eds. - Textbook of Work Physiology - Physiological Bases of Exercise (3rd ed.) - New York :McGraw-Hill;1986. pp. 354-387.
Nijs J, Vanherberghen K, Duquet W, De Meirleir K - Chronic fatigue syndrome - Lack of association between pain-related fear of movement and exercise capacity and disability - Phys Ther 2004;84:696-705.
Nijs J, De Meirleir K - Prediction of peak oxygen uptake in patients fulfilling the 1994 CDC criteria for chronic fatigue syndrome – Clin Rehabil 2004;18:785-792.
Fulcher KY, White PD - Strength and physiological response to exercise in patients with chronic fatigue syndrome - J Neurol Neurosurg Neuropsych 2000;69:302-307.
Iedereen heeft wel eens te kampen met stress, maar is die nu goed of slecht ? En hoe kan je het beste stress vermijden. Hierna enkele gouden tips voor elke dag.
Ieder van ons heeft op de één of andere manier wel eens kennisgemaakt met het gevoel de situatie niet meer aan te kunnen, een gevoel van onmacht.
Op zulke momenten voelen we ons beroofd van onze krachten, zijn we moe, totaal uitgeput. Het lukt ons niet meer de problemen die op ons afkomen objectief te bekijken. We krijgen zelfs last van ongewone vermoeidheid die neerdaalt als een zware last op onze schouders. Onze eetlust krijgt zijn grillen, het ene moment hebben we totaal geen trek en het andere moment zijn we ineens vraatzuchtig. We worden prikkelbaar en vallen soms zonder reden uit tegen onze dierbaren die ons juist niets hebben misdaan. Er is maar één boosdoener verantwoordelijk voor deze herrie : stress.
Stress treft alle leeftijden, alle lagen van de bevolking. Niet alleen werklozen die zich zorgen maken over een onzekere toekomst,maar ook de leidinggevende die een zware verantwoordelijkheid te dragen heeft. Toch is stress niet alleen maar een vijand. Hij heeft zijn goede en zijn slechte kanten. Want of je het nu graag hoort of niet, zonder stress zou er geen leven mogelijk zijn. Een groot aantal hedendaagse klachten van stress is slapeloosheid, migraine, spijsverteringsmogelijkheden, plotseling opduikende pijnen waar je geen bestemming aan kan geven, ...
Hoe kan je stress nu bestrijden ?
Neem tarwekiemen als pepmiddel Om zich aan te passen aan stress heeft ons zenuwstelsel vitamine B nodig. In moeilijke tijden kunt u uw lichaam helpen door een tarwekiemkuur te volgen omdat dat de beste leverancier is van B-vitaminen.
Haal diep adem We hebben allemaal een gratis, gemakkelijke en doeltreffende voorziening tegen stress : onze ademhaling. Tenminste als we die op de juiste manier leren gebruiken.
Doe aan yoga Yoga is een oeroude ontspanningstechniek uit India die de eenheid van lichaam en geest behelst. Door bepaalde lichaamshoudingen kunnen we ons ontdoen van spanningen en onze kijk op het leven wijzigen.
Beschouw uzelf als een boom Zichzelf zien als een boom behoort ook tot één van de oefeningen van yoga. Deze oefening, die berust op een wankel lichamelijk evenwicht, is een uitstekende concentratieoefening.
Doe een middagdutje
Adem zuivere lucht in De lucht die we inademen bevat niet alleen zuurstof voor onze cellen. Er zitten ook negatieve ionen in, vitaminen an de lucht. Wanneer er een tekort van ontstaat, worden we prikkelbaar en nerveus.
Ren, spring en beweeg...
Rek u uit als een kat Om weerstand te bieden aan stress hebben we de neiging te verstarren. Voordat we klachten ontwikkelen, is het beter te leren ons uit te rekken.
Leer u te ontspannen
Lever u over aan de muziek Om beter te ontspannen kunt u uw toevlucht zoeken in de muziek. Sommige ritmen en sommige tonen vertragen de hersengolven, waardoor u ontspant en rustig wordt. Muziektherapie is trouwens inmiddels zelfs een volwaardige therapie tegen stress geworden.
Leer mediteren
Neem vitaminen Regelmatig een kuur volgen van de vitaminen van de groepen A,B,C en E.
Laat u masseren
Denk positief
Leer van uzelf te houden
Laat u niet meer manipuleren
Neem de tijd
Uit uw gevoelens Ondergedrukte gevoelens vormen een gezwel iin ons dat voor chronische stress zorgt.
Zo, dit waren 18 gouden tips voor elke dag. En onthoud goed : laat stress uw leven niet beïnvloeden !! U bent uiteindelijk meester van uw eigen lichaam.
Binnenkort kun je op de site meer informatie verwachten over dit boek en kun je alvast voorinschrijven om dit boek zo snel mogelijk in huis te hebben ! Rondom het uitkomen van 'Emotionele Fitness' houd ik wederom een lezingentour. Meer informatie over de data vind je op : http://www.roymartina.com/news.php?cgy_id=29&ace_id=178 -.
Hoe kun je stressvrij leven ?
Een goede vriend van mij, wereldkampioen Kickboxen Robbie Kaman, behandelt dagelijks zijn EE-punten met de Acpasonic. De Acpasonic is een klein apparaatje dat trilt en een infrarode straal uitzendt om de acupressuurpunten te activeren. Hij zweert erbij.
Stressvrij leven of stress verminderen en weer vitaal worden is niet zo moeilijk.
Duizenden mensen zijn je reeds voorgegaan en hebben met succes een aantal technieken geleerd om zichzelf te helen en beter om te gaan met stress. Ook ervaren ze als bijwerking meer zelfvertrouwen en staan sterker in het leven.
Wil je sneller resultaten bereiken en een mini massage apparaat hebben voor stijve spieren, acupressuur en relaxatie, dan zou ik de Acpasonic aanschaffen.
De Acpasonic komt uit China en wordt gebruikt in de plaats van acupunctuurnaalden. Het is een handig apparaat, dat in de handpalm past. Het wordt veel gebruikt voor zelfmedicatie, maar ook door veel therapeuten. Veel mensen die de training 'Emotioneel Evenwicht' hebben gedaan, kiezen voor de Acpasonic om niet zelf de EE-punten te hoeven masseren. De Acpasonic heeft een infrarood signaal en een trilling. De punt op acupressuurpunten zetten, heeft dezelfde werking als acupunctuurnaalden. Het signaal en de trilling komen onder de huid en activeren de meridianen. Hard drukken is niet nodig. Het apparaat is uitgebreid getest en blijkt een zeer diepe werking te hebben. Ideaal voor privé gebruik of voor hen die als therapeut dagelijks hiermee aan de slag zijn. Cfr. : http://www.roymartina.com/shop.php?command=display_product&pdt_id=129
Mijn doel is mensen onafhankelijk te maken van artsen en therapeuten en hen te leren hoe ze zichzelf kunnen genezen en vitaal en gezond te worden en blijven. Mijn droom en missie is om duizenden mensen te helpen om langer en gezonder te leven en uiteraard pas ik mijn methodes op mezelf toe.
Tijd om te stoppen met praten en er wat aan te gaan doen !
De 3-daagse cursus 'Emotioneel Evenwicht' start 30 maart a.s. en is één van de beste investeringen die je ooit in jezelf kunt doen. Niet alleen leer je de 14 acupressuurpunten waarmee je alle emoties, stress en vervelende ervaringen in je leven snel kunt behandelen, maar je leert ook hoe je emoties en stress kunt omzetten in persoonlijke kracht en hoe je moeilijke situaties in je leven kunt aangaan zonder weg te lopen van zaken die je voorheen intimideerden. Het mooie van deze 3-daagse cursus is, dat je ook anderen na slechts 3 dagen oefenen kunt helpen.
EE behoort tot een van de meest effectieve methoden in de alternatieve geneeskunde. Een groep acupunctuur artsen (zij moeten in hun studie meer dan 400 acupunctuurpunten leren) vroeg mij om hen EE te leren. Zij ondervonden namelijk dat bepaalde patiënten, die zij eerst niet konden behandelen, na een 3-daagse cursus EE – cfr. : http://www.roymartina.com/workshops.php?command=display_workshop&wte_id=13 - veel meer vooruitgingen dan in 2 of 3 jaar behandeling met acupunctuur !
Wat is het geheim van EE en waarom is het vaak effectiever dan acupunctuur, homeopathie en kruiden samen ?
Het antwoord is simpel. EE is een combinatie met een methode die 'kinesiologie' heet.
Kinesiologie Energetische Kinesiologie (EK) is een systeem van testen waarin Oosterse visies van het stromen van energie, zoals deze gebruikt worden in de acupunctuur, gekoppeld worden aan westerse spiertesten. Volgens de Britse ‘Kinesiology Federation’ betekent ‘Kinesiologie’ letterlijk 'de studie van de bewegingen van het lichaam'. Het is een holistische benadering om balans te brengen in de beweging en interactie van het energiesysteem van de mens. Door zachte druk uit te oefenen op een geïsoleerde spier worden die gebieden in beeld gebracht waar blokkades en onbalans de fysieke, emotionele en energetische zwakten het welzijn van de mens verstoren. De natuurlijke genezingsresponsen van het lichaam worden gestimuleerd door gebruik te maken van gespecialiseerde behandelingstechnieken zoals osteopathie, chiropractie, acupunctuur, homeopathie, orthomoleculaire fytotherapie en aanpassingen in de voeding. Dit alles met het doel een verhoogd fysiek, mentaal, emotioneel en spiritueel welzijn. Het systeem van onderzoeken door middel van kinesiologie is het resultaat van onderzoekingen die George Goodheart, een amerikaanse chiropractor, in 1964 deed, ter evaluatie van de effectiviteit van zijn behandelingen. Hij ontwikkelde deze wetenschap, gaf zijn kennis door aan therapeuten wereldwijd en noemde zijn systeem ‘Applied Kinesiology’. Het begrijpen van de lichaamstaal van het meridiaansysteem vergroot de mogelijkheid van het begrijpen van de dysfuncties die de symptomen veroorzaken wanneer er nog geen pathologisch proces leidt tot een diagnose. De energetische toestand is meestal de blauwdruk van een fysieke toestand in wording. Pas wanneer een gestagneerde energie zich materialiseert uit zich dat in een fysieke aandoening. Door het maken van een energetisch bilan kan er zou op tijd ingegrepen worden om mogelijke zich ontwikkelende pathologieën al dan niet te voorkomen. Cfr. : http://nl.wikipedia.org/wiki/Kinesiologie
Kinesiologie kun je al binnen 1 dag leren en je kunt er direct mee aan de slag. Kinesiologie zoals wij het binnen EE gebruiken, maakt gebruik van het uittesten hoe een bepaalde spier reageert op een situatie of een vraag of herinnering. Als de spier sterk blijft, betekent dit dat er geen stress meer ontstaat door die situatie, herinnering of vraag. Indien de spierkracht zwakker wordt, betekent dat die situatie, herinnering of vraag een stressreactie geeft en niet goed is voor je lichaam.
Met andere woorden, via kinesiologie kun je vragen stellen aan het onbewuste. Het onbewuste heeft alle antwoorden en is direct verbonden met de genezingsintelligentie van het lichaam. Hoe werkt EE ? Je kunt alleen ja/nee antwoorden krijgen. Bijvoorbeeld : je brengt de aandacht van de persoon op een vervelende ervaring uit hun jeugd of op een vervelende situatie waarin ze nu zitten. Indien die situatie niet geheeld is of ze niet met die situatie kunnen omgaan, ontstaat er onmiddellijk stress bij die persoon (dat voel je aan de zwakke spier). Dan vraag je aan het onbewuste: welk acupressuurpunt is de beste om nu in te zetten ? En door de punten één voor één aan te raken, merk je dat bij een bepaald punt de spiertest verandert van zwak naar sterk en weet je dit het punt is om te behandelen. Het werkt razendsnel en werkelijk iedereen kan het leren. Mijn kinderen konden spiertesten vanaf hun 10e jaar en hebben aan verschillende workshops meegedaan. Zij zijn hun hele leven behandeld via deze spiertest en hebben praktisch nooit medicijnen hoeven gebruiken (met een paar uitzonderingen bij astma aanvallen). Ik heb duizenden mensen binnen korte tijd van hun fobieën afgeholpen met EE. Veel mensen hebben deze cursus reeds gedaan en velen zijn nog steeds superhappy met wat ze hebben geleerd.
Beslis nu en verander voor altijd je leven !
Nu is het aan jou om 30 maart a.s. 3 dagen vrij te maken en je te verdiepen hoe je meer uit je leven kunt halen. EE is o.a. onderdeel van het 1e 'Mind & Body Coach' jaar – cfr. : http://www.roymartina.com/educations.php?command=display_education&etn_id=15 - en kan als module los gevolgd worden. Je kunt het EE weekeinde doen als losse module en daarna eventueel besluiten of je meer wilt.
EE is ideaal voor stress, emotionele zaken, onverwerkt verdriet, lichte depressies, fobieën, gebrek aan eigenwaarde, onzekerheid, pijn, burnout, verminderde vitaliteit en als ondersteuning bij alle chronische ziekten. Het is net alsof je jezelf acupunctuur behandelingen geeft, maar dan zonder de naaldjes die bij acupunctuur behoren.
Kom tot rust en revitaliseer jezelf met een weekeinde EE. Het is ‘fun’, leuk, dieprakend en ontspannend en je komt boordevol energie weer thuis. Je laat de universele energie weer door je lichaam stromen. Wil je meer weten over het EE weekeinde, ga dan naar : http://www.roymartina.com/workshops.php?command=display_workshop&wte_id=13 -.
Begin de dag zonder stress Sjoukje van de Kolk - Columns Levensstijl, 14-01-07 : www.simplifylife.nl – (c) 2004, 2005 Westwood's Heerlijk, kersvakantie. Niet te vroeg opstaan, geen broodtrommels te vullen, geen gehaast 's morgens. Kon het maar altijd zo gaan! Tijd voor goede voornemens: maak van je ochtendritueel geen haastklus .../... Cfr. : http://www.mamas.nl/primosite/show.do?ctx=4538,114956,114955,143391
Op de bres tegen stress Landsbond van Onafhankelijke Ziekenfondsen Stress is een begrip dat ontleend is aan de materiaalkunde en betekent letterlijk ‘spanning’ of ‘druk’. De mate waarin materialen tegen druk bestand zijn, bepaalt hun stressbestendigheid : wordt het buigen of barsten ? Is er genoeg spankracht of is de rek er uit ? Het zijn vragen die je niet alleen bij materialen, maar ook bij mensen kan stellen. Stress bij mensen is dus ook een gevoel van spanning, dat veroorzaakt wordt door allerlei invloeden van buitenaf. Of, in de woorden van de man die zo’n zeventig jaar geleden stress bij mensen ‘uitvond’, de Praagse arts Hans Selye : “Stress is een antwoord van ons organisme op een bepaalde stimulans, die in eerste instantie moet worden gezien als een reactie van het organisme om zich aan te passen aan een abnormale situatie.” Cfr. : http://www.partena-ziekenfonds.be/jsp/index.jsp?tmplt_folderid=456&id=4579&language=Nl&origin=Common
