ME/CFS & FM Patient Support Websites

I started looking through the web for patient support on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS),  and Fibromyalgia (FM) and then decided to work on a compilation of ME/CFS and FM patient support websites around the world. There are a lot of great websites out there providing knowledge and empowerment to the people that need help.

CANADIAN ME/CFS, FM WEBSITES

National ME/FM Action Network :

  • Establishes relationships with both the provincial and federal governments in Canada to improve the lives of people ill with ME/CFS and FM.
  • Develops contacts with medical and legal professionals.
  • Works with national and international support groups.

The Myalgic Encephalomyelitis Association of Ontario (MEAO):

  • A volunteer-run organization that has been serving the community since 1991.
  • It offers information and support to people living with ME/CFS, as well as family members, physicians and other professionals, and the general public.

FM-CFS Canada:

  • A national coalition of nearly 100 FM/CFS support groups.
  • A bilngual website containing information support group lists, economic analyses, research information, a media center, a National Action Plan, a legal center, question and answer pages, and patient stories.

Nightingale Research Foundation :

  • Dr. Byron Hyde has been involved in ME/CFS treatment/advocacy for many years.

The Myalgic Encephalomyelitis and Fibromyalgia Societies of BC :

  • Links and resource information on ME/CFS and FM
  • Links for physicians and researchers
  • Legal and disability advocacy
  • Information and links on related illnesses such as multiple sclerosis, arthritis, environmental illness, multiple chemical sensitiviy, Lyme disease, Lupus 

UNITES STATES ME/CFS, FM WEBSITES

 Phoenix Rising Forums :

  • Phoenix Rising Forums is a leader within the ME/CFS field.
  • Contains forums discussing treatments, research, news and events.
  • Cort Johnson is owner of the Phoenix Rising Forums and creator of the Phoenix Rising Website (aboutmecfs.org). Cort has had ME/CFS since the 1980′s.

CFIDS Association of America (CAA) :

  • CAA is probably the most active CFS organization in the world.
  • Professional national advocacy and support group.
  • Offers frequent Webinar series with top ME/CFS professionals.
  • An innovative Research Initiative, Facebook site, etc.

Prohealth :

  • One of the busiest ME/CFS site on the web.
  • A nutritional supplement company founded by ME/CFS sufferer  and philanthropist Rich Carson.
  • Provides message boards, chat rooms, frequent talks by doctors, a newsletter and much more.

Co-Cure :

  • Co-Cure is an e-mail list and website . The name stands for Cooperate and Communicate for a Cure.
  • It’s the major hub for ME/CFS,  and FM information.
  • The mailing list was established with the goal of furthering co-operative efforts towards finding a cure for ME/CFS, and FM.
  • The first state ME/CFS Research Institute ever (in Reno, Nevada)
  • Research into the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism.
  • Built with the assistance of the Whittemores and Dr. Peterson.

Fighting Fatigue :

  • An easy to understand website.
  • Contains lots of articles, resources and links.

FM/CFS/ME Resources :

  • Clear, concise, attractive, very informative website.
  • Contains an excellent newsletter, a treatment section, disability information on 8 different countries and a world-wide ME/CFS doctor database.

Environmental Illness Resource :

  • Put together by someone with CFS and MCS for over 15 years, EIR contains lots of resources.
  • Includes products that may be helpful for ME/CFS, MCS, fibromyalgia and other illnesses.

P.A.N.D.O.R.A. :

  • Miami advocacy founded by Marly Silverman.
  • It has quickly become one of the most active advocacy groups in the U.S.

The New Jersey CFIDS Association :

  • Sponsors conferences, has regular speakers, a doctor referral list, and information on how to diagnose and treat CFS.

The CFS Report :

  • Craig Maupin has done the research to help explain why the major medical research institutions in the U.S. have failed CFS patients so miserably.

The M.E. Society of America :

  • An informative website focused on Myalgic Encephalomyelitis.

The Rocky Mountain CFIDS/FMS Association :

  • Online newsletter, basic information on ME/CFS and, if you’re near Denver, an active seminar series.

The Wisconsin Chronic Fatigue Syndrome Association :

  • Offers a quarterly newsletter, discussion forum, phone support and more.

IACFS/ME :

  • Contains information on CFS management, drugs, the definition issues and more.
  • The IACFS/ME puts on the bi-annual International Conferences for CFS.

CPN HELP :

  • Provides support for ME/CFS, MS and other patients who have Chlamydiae Pneumoniae infection.

EUROPEAN ME/CFS, FM WEBSITES

MERUK (Myalgic Encephalitis Research United Kingdom)

  • Synopses of recent research by this research group and others.

ME Action UK :

  • Lots of links and articles on ME/CFS

Association for Young People with ME (AYME):

  • UK site for young people with ME/CFS

The Overton Studios Trust :

  • Established by Dr. Michael Midgley, this UK Christian Charity focuses on the power of therapeutic thinking (peaceful, loving, caring) to increase ME/CFS patients’ well-being.

Irish ME Trust :

  • An excellent Irish resource for ME/CFS. On the web since 1989.

CFS Research:

  • Explore a large collection of research articles on Chronic Fatigue Syndrome, Fibromyalgia and related disorders from a variety of medical journals.

ESME (European Society for ME):

  • A European organization of ME/CFS professionals that is designed to provide a ‘think-tank’ for issues pertaining to ME/CFS.

MEsite :

  • The Danes have put together a professional, frequently updated site.

AUSTRALIAN ME/CFS, FM WEBSITES

ME/CFS (SA) :

  • Top Aussie website : excellent patient-friendly papers and lots of links to other sites.

The Canberra Fibromyalgia and CFS Pages:

  • Lots of information, particularly on the Australian research scene, plus some really good stories.

OTHER WEBSITES

ME India :

  • First Indian ME/CFS website
  • Complete with information and stories

ME Malta :

  • Very nicely put together and regularly updated site.

______________________

* Thanks to the Phoenix Rising Website for an invaluable source of information on ME/CFS and FM support.

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3 Responses to ME/CFS & FM Patient Support Websites

  1. Jeff says:

    Très bien documenté… Intéressant de savoir ou sont les ressources.

  2. randki says:

    Greetings! Very helpful advice within this article!
    It’s the little changes which will make the most important changes. Thanks for sharing!

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