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CFS and ME Organisations

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Here’s a list of some of the main organizations in the UK, US, Canada, and Europe that are dedicated to Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS):

United Kingdom

  1. ME Association: Provides information, support, and practical advice for people affected by ME/CFS.
  2. Action for ME: Works to improve the lives of people with ME/CFS through support, advocacy, and research.
  3. Invest in ME Research: Aiming to establish a national strategy for research into ME and improve education about the disease.
  4. ME Research UK: Funds scientific research into the causes, consequences, and treatment of ME/CFS.
  5. ME Trust: Offers care and support to people with ME/CFS. (Now part of Action for ME.)

United States

  1. Solve ME/CFS Initiative (SMCI): Focused on research, advocacy, and education to make ME/CFS understood, diagnosable, and treatable.
  2. MEAction Network: A global, patient-driven network advocating for people with ME/CFS.
  3. Open Medicine Foundation (OMF): Funds research for ME/CFS and related chronic complex diseases.
  4. Bateman Horne Center: Emphasizes clinical care and research in ME/CFS.

Canada

  1. National ME/FM Action Network: Advocates for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia.
  2. ME/FM Society of BC (British Columbia): Provides information, support, and advocacy for individuals with ME/CFS and Fibromyalgia in BC, Canada.
  3. MEAO – Myalgic Encephalomyelitis Association of Ontario: Offers support, advocacy, and education for those affected by ME/CFS in Ontario.

Europe

  1. European ME Alliance (EMEA): A collaboration of European ME/CFS organizations advocating for the rights of people with ME.
  2. Deutsche Gesellschaft für ME/CFS (Germany): A German association dedicated to improving the situation of ME/CFS patients in Germany.
  3. Hope 4 ME & Fibro Northern Ireland: Focusing on raising awareness and providing support for ME/CFS patients in Northern Ireland.
  4. Association Française du Syndrome de Fatigue Chronique (France): A French organization dedicated to providing support and information for people with CFS.

These organizations play a crucial role in providing support, advocacy, and research into ME and CFS, helping to raise awareness and improve the lives of those affected by these conditions. They also offer a wealth of resources for patients, healthcare professionals, and the public.

Are you part of any Burnout / ME / CFS groups or supporting bodies? Have you had any experience interacting with any of the organisations listed here? Please let us know your experiences on the Share your Story page.