European Union

Austria, Belgium, Bulgaria, Croatia, Republic of Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Poland, Portugal, Romania, Slovakia, Slovenia, Spain and Sweden. (Those in RED have their own page.)

We have organized this list by the criteria used by each organization, as determined by information within their website.
While some organizations may not specifically state which criteria they use, most give information on what primer to use or how to get a diagnosis.  We are categorizing them by what diagnosis or primer is used.
For those that aren't clear they are in the "Undetermined" category.

ICC Organizations

Millions Missing France  -  France
"Millions Missing France " est une association collégiale qui milite pour la connaissance et la reconnaissance de l'encéphalomyélite myalgique (EM) en France.... L'EM est une maladie neurologique chronique invalidante, reconnue par l'Organisation mondiale de la santé (OMS) depuis 1969, mais toujours pas par les autorités sanitaires françaises. Elle est encore connue sous le terme ancien et inapproprié de "syndrome de fatigue chronique" (SFC). Millions de Miss France a choisi de n'utiliser que l'expression "encéphalomyélite myalgique" et son acronyme EM [ME], conformément à la dénomination de l'OMS de novembre 2020 et conformément aux souhaits d'une grande partie de la communauté des patients."
"Millions Missing France is a collegial association which campaigns for the knowledge and recognition of myalgic encephalomyelitis (ME) in France... ME is a chronic disabling neurological disease , recognized by the World Health Organization (WHO) since 1969, but still not by the French health authorities. It is still known by the old and inappropriate term of "chronic fatigue syndrome" (CFS). Millions Missing France has chosen to use only the expression "myalgic encephalomyelitis" and its acronym EM [ME], in accordance with the WHO denomination of November 2020 and in accordance with the wishes of a large part of the patient community."
Board Members:  Emilie Dubrail, Myriam Goret, Stéphanie Maury, Julia Sauvegrain, Chantal Somm, Sylvie Testard
Registered Charity
Groep ME-Den Haag  -  Netherlands
"Groep ME-DenHaag is an occasional group that fights for better treatment of and for ME patients in the Netherlands. ... We The Myalgic Encephalomyelitis (ME) patients and sympathizers in the Netherlands observe That the diagnosis and treatment of ME patients is not adequate. ME is incorrectly classified as a psychosomatic disorder and therefore treated as such. Some 5000 papers, including the International Consensus Criteria for ME (Carruthers), show that ME is a serious neuroimmune disease and requires thorough diagnosis and biomedical treatment."

M.E. Centraal  -  Netherlands
"ME Central is een platform voor uitwisseling en delen. Ontworpen voor en door mensen die meer duidelijkheid en duidelijke communicatie willen over de ziekte ME en de ernst ervan." Hier verschijnen steeds meer artikelen in het Engels. Vanaf januari 2021 is dit de opslagplaats voor de ME Global Chronicle."
"ME Central is a platform for exchange and sharing.  Designed for and by people who want more clarity and clear communication about the disease ME and its severity."  More and more articles in English are being published here.  As of January 2021, this will be the repository for the ME Global Chronicle.
Founder:  Rob Wijbenga
Zie HIER voor een Nederlandse vertaling van ME International's "Dr. Handout Based On the IC Primer"
See HERE for a Dutch translation of ME International's "Dr. Handout Based On the IC Primer"
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ME/CVS Vereniging --  ME/CFS Association  -  Netherlands
"Wij zetten ons in voor aandacht en erkenning voor de ziekte ME/cvs, zodat er meer kennis en begrip ontstaat. We werken aan publieke bewustwording en zorgen ervoor dat ME/cvs op de politieke agenda staat. We communiceren met de pers, delen patiëntenverhalen, ontwikkelen voorlichtingsmiddelen en verspreiden leerzame informatie over ME/cvs. Dat is de eerste stap naar meer financiering voor wetenschappelijk onderzoek en naar betere zorg."
"We are committed to bringing awareness and recognition to the ME/CFS disease, so as to increase knowledge and understanding. We are working to raise public awareness and make sure ME/CFS is on the political agenda. We interact with the press, share patient stories, develop educational resources and spread educational information about ME/CFS. This is the first step towards more funding for scientific research and towards better care."
Board Members:  Ramon Kemperman, Carolien van Leijen-Waardenburg, Kor Werkman, Ike van Doorn & Jordy de Haan (2022)
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Steungroep ME en Arbeidsongeschiktheid -- ME & Disability Support Group  -  Netherlands
"De Steungroep ME en Arbgeidsongeschiktheid bestaat sinds november 1994, vanaf april 1995 als stichting.  De Steungroep bestaat grotendeels uit vrijwilligers die zelf met ME of CVS te maken hebben, als patiënt of als naaste van een patiënt.  De activiteiten van de Steugroep worden gefinancierd uit bijdragen van vaste donateurs, verkoop van informatiemateriaal en schenkingen."
"The ME and Occupational Disability Support Group has existed since November 1994, from April 1995 as a foundation. The Support Group consists largely of volunteers who deal with ME or CFS themselves, as a patient or as a close relative of a patient. The activities of the Support Group are financed by contributions from regular donors, sales of information material and donations."
Board Members:  Catrinus Egas, Karin Brandt, Cobi de Kort, Weird de Bruin, and Ynske Jansen (co-founder/advisor).
To find additional ICC orgs, see our International page.


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