ME-ICC Organizations – ME International

Get Connected

ME can leave us feeling isolated. You are not alone!
There are many organizations that can provide information to help you connect. Below are links to organizations from around the world, including archived organizations.

Each organization focuses on various patient populations.
MEI supports the use of the International Consensus Criteria (ICC) as do the organizations listed below (as indicated within their respective websites). To understand the different criteria see this page.

If you know of others that we don’t have listed, or have updated information on those we do list, please email us at
Beheerder@ME-International.org

Go To:

International        Australië         Europe
Ireland                  Norway         South Africa
Spain                   Switzerland     Verenigd Koninkrijk
Verenigde Staten

International Organizations

ME-International
To support ME organizations, educate the general public, medical providers, and governments throughout the world as well as support ME patients, caregivers, advocates, family and friends.
Board of Directors: James Lutey, David Steckel, Mary Kelley, Heather Seckinger, Colleen Steckel, Pam Lutey, Suzy Paulsen, James Davis, Jessica Freeman
501(c)(3) nonprofit – United States

Global Advocates for MEICC (GAME)
“Our effort in this group is to recognize that ME is the diagnosis and the ICC 2011 is the criteria. We do not acknowledge ME/CFS, CFS/ME as part of the criteria and we do not interchange CFS with ME or vice versa.”
Board Members: Guido Den Broeder, Joan Byrne, John Gabor, Wendy Boutilier
Canada

The ME Global Chronicle
The M.E. Global Chronicle is a quarterly publication, focusing on current M.E. news regarding worldwide science, politics, petitions, severe ME, events and more. Subscribe by sending an email to subscribe@let-me.be
Editor/Editorial Team: Eddy Keuninckx, Rob Wijbenga, Colleen Steckel
Belgium

Australian Organizations

ME Group Australia
“Our purpose is to advance health for ME in Australia [by] … support[ing] ME research into the causes, diagnosis, treatment and/or management of the disease, … aim[ing] to establish and operate ME clinics for diagnosis, management, treatment, research collaboration and patient support, … [and] aim[ing] to facilitate networking for people with ME and communities.”
Directors: Justin Hogg, R. Rachel Makepeace & Angela Richardson
Registered Australian Charity

ME Australia
“Established in 2016, ME Australia aims to improve the lives of people with ME by advocating for change, in partnership with scientists, other individuals, organisations in Australia and internationally.”
Founding Members: Unknown
Not a Registered Charity

The Hummingbirds’ Foundation for M.E. (HFME)
“The HFME is dedicated to fighting for the recognition of Myalgic Encephalomyelitis based on the available scientific evidence, and for patients worldwide to be treated appropriately and accorded the same basic human rights as those with similar disabling and potentially fatal neurological diseases such as Multiple Sclerosis.” (Archived) Some of the information is outdated due to the death of the founder on 14 June 2016. ~MEI
Founder: Jodi Bassett (deceased)
**ME as described by Ramsay & Dowsett. HFME info created prior to ICC.

European Organizations

FRANCE:

Millions Missing France
“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

For documents in French, please see our Translations page.

NETHERLANDS:

Groep ME-Den Haag
“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
“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
Zien HIER for a Dutch translation of ME International’s “Dr. Handout Based On the IC Primer”

ME/CVS Vereniging — ME/CFS Association
“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)

Steungroep ME en Arbeidsongeschiktheid — ME & Disability Support Group
“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).

For documents in Dutch and Danish, please see our Translations page.

GERMANY:

Visit the Swiss Society for ME & CFS for a questionnaire that will enable you to clarify for yourself whether the diagnosis of ME (Myalgic Encephalomyelitis) according to the International Consensus Criteria (ICC) is applicable to you.

There are no official organizations in Germany focused on the ICC, however Katharina Voss has created a petition, written a book en blogs which provide a great deal of information on diagnosis and treatment which is based on the ICC. Information on her antiretroviral therapy can be found HIER.

For documents in German, please see our Translations page.

Irish Organizations

ME Advocates Ireland (MEAI)
“ME Advocates Ireland are a non-profit, volunteer group who are fighting for change and recognition of ME in Ireland by promoting greater understanding and awareness of ME in the general public, medical profession and other related services, and by procuring political support for the cause with the aim of bettering conditions for ME patients.”
Co-founder/Members: Moira Dillon, Joan Byrne, Christine Fenton, Noreen Murphy, Corina Duyn, Rachel Lynch, Camilla Cruise

Norwegian Organizations

There are currently no known ICC organizations within Norway.

For documents in Norwegian, please see our Translations page.

South African Organizations

The ME CFS Foundation of South Africa
“The ME CFS Foundation South Africa supports people with ME/CFS and co-morbid conditions which often occurs with ME/CFS such as Fibromyalgia, POTS (Postural Orthostatic Tachycardia Syndrome), etc.” We are the only organization for ME in South Africa and prefer to use the ICC criteria. ~ Retha
Founder and Director: Retha Viviers, Co-Founder: Clarinda Viviers
Registered Non-profit

Spanish Region Organizations

There are currently no known ICC organizations within the Spanish Region.

For documents in Spanish, please see our Translations page.

Swiss Organizations

Swiss Society for ME & CFS
“Since ME is poorly researched, there is still no generally accepted marker for an unambiguous diagnosis. Therefore, the diagnosis is made using a set of criteria. The International Consensus Criteria (ICC) were developed on the basis of researched physical dysfunctions and years of clinical experience of internationally recognized experts. They allow an accurate diagnosis from the onset of the disease.”
Founding Members: Maya Leutwiler u. Jonas Sagelsdorff
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HIER you will find a questionnaire that will enable you to determine for yourself whether you qualify for a diagnosis of ME (myalgic encephalomyelitis) according to the International Consensus Criteria (ICC).
We recommend that patients take good care of themselves before completing the questionnaire. Make sure, as much as possible, that you have enough energy reserves to avoid overexertion and to concentrate well.
Patients with cognitive impairments should have help with this. For children or severely affected patients, a caregiver can complete the questionnaire for them.
Important: This questionnaire does not replace a medical diagnosis. You can download a report at the end of the questionnaire and bring it to your doctor to help with the diagnosis.

United Kingdom Organizations

25% ME Group
“The 25% M.E. Group is a nationwide charity, which campaigns to raise awareness of M.E and provide services to people affected by severe M.E..”
Patron: Dr Bryon Hyde
Advisors: Dr Nigel Speight, Dr Vance Spence, Malcolm Hooper
Registered Charity – Scotland

Hope 4 ME and Fibro
“The purpose of the charity is to provide educational events for healthcare providers and decision makers with events delivered by world experts in Myalgia Encephalomyelitis and Fibromyalgia. To lobby the Northern Ireland Legislative Assembly to provide specialist NHS services, to fundraisers for biomedical research and to support patients through monthly group meetings with specialist speakers.”
Board of Trustees: Joan McParland, Martina Marks, Hugh Boyle, Catherine Lynch, Rhea Snounou, Eilidh Gilmour
Advisors: Dr. William Weir, Dr. Nigel Speight, Dr. Vance Spence, Professor Brian Hughes
Registered Charity – Northern Ireland

ME Foggy Dog
“To improve the quality of life of M.E. patients using every available means and opportunity.”
Founder: Sally Callow
Certified Social Enterprise – England

United States Organizations

ME-International
To support ME organizations, educate the general public, medical providers, and governments throughout the world as well as support ME patients, caregivers, advocates, family and friends.
Board of Directors: James Lutey, David Steckel, Mary Kelley, Heather Seckinger
Board Members: Pam Lutey, Colleen Steckel, Suzy Paulsen, James Davis, Jessica Freeman
501(c)(3) nonprofit

MEadvocacy.org
Recognition, Definition, & Research for Myalgic Encephalomyelitis (ME) ICC.
Advisory Committee: Joni Comstock, Colleen Steckel, Tracey Ann-Tempel Smith, Gabby Klein
Project of May12.org – 501(c)(3) nonprofit

May12.org
Raise global awareness and education for complex immunological and neurological diseases (CIND) including ME.
Board Members: Joni Comstock, Tracey Ann-Tempel Smith, RJ James, Lea Wolven
501(c)(3) nonprofit

National Alliance for ME (NAME-US) (archived)
Established to address the issues of recognition and definition, and to raise awareness of this devastating neuroimmune disease.
Co-Founders: Steven Du Pre and Lois Ventura