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.
- 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 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.
- 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.
- An easy to understand website.
- Contains lots of articles, resources and links.
- 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.
- 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.
- 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.
- 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.
- Lots of links and articles on ME/CFS
Association for Young People with ME (AYME):
- UK site for young people with ME/CFS
- 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.
- An excellent Irish resource for ME/CFS. On the web since 1989.
- 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
- 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.
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* Thanks to the Phoenix Rising Website for an invaluable source of information on ME/CFS and FM support.
Très bien documenté… Intéressant de savoir ou sont les ressources.
Merci Jeff.
Greetings! Very helpful advice within this article!
It’s the little changes which will make the most important changes. Thanks for sharing!