Get Connected
ME and similar illnesses are very isolating. It is difficult for anyone not suffering from ME or similar illness to understand the difficulty to live with ME. This is one of the reasons we spend a great deal of time to try and bring people together, so they know they are not alone. MEI has created community chats on Facebook to give sufferers a place to congregate with individuals who share their tribulations. We strongly believe there needs to be more unity in the community to advocate and fight for better research and treatments. This page is dedicated toward these goals.
There are many organizations that can provide information to help you connect. Below are links to organizations from around the world, but it is by no means exhaustive. These are organizations we have either collaborated with or have been recommended.
Along with the links below, here is an MEpedia page ran by ME Action that has an ongoing list from organizations around the world. Here is the link
International ME Organizations
Established in 2019, ME International is an all-volunteer organization dedicated to raising awareness and education for the ME community and medical community alike. Given the needs of the ME community and the debilitating nature of ME, we saw an enormous need for support. We 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.
We work to drive policy change to improve the lives of Australians living with ME/CFS. Emerge Australia is committed to ensuring that the needs and concerns of Australians living with ME/CFS and long COVID are heard and addressed.
Emerge Australia, is working to update evidence based clinical guidelines, so health professionals can better diagnose and manage these debilitating conditions.
Read more here
fights for recognition, research and clinical education so that, one day, all people with myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME, or ME/CFS), and Long COVID will have access to compassionate and effective care.
Home – Solve ME/CFS Initiative
The Solve ME/CFS Initiative (Solve M.E.) is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid and other infection-associated chronic conditions and illnesses (IACCIs).
The Massachusetts ME/CFS & FM Association exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.
ME Group Australia
Our purpose is to advance health for ME in Australia by supporting ME research into the causes, diagnosis, treatment and/or management of the disease, to establish and operate ME clinics for diagnosis, management, treatment, research collaboration and patient support, to facilitate networking for people with ME and communities.
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.
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.
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.
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.
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.
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.
For documents in Dutch and Danish, please see our Translations page.
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.
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.
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.
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..
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.
ME Foggy Dog
To improve the quality of life of M.E. patients using every available means and opportunity.