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
- 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.
- 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.
- Dr. Byron Hyde has been involved in ME/CFS treatment/advocacy for many years.
- 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.
- 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 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.
- 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.
- 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.
- Online newsletter, basic information on ME/CFS and, if you’re near Denver, an active seminar series.
- Offers a quarterly newsletter, discussion forum, phone support and more.
- 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
- 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.
- 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.
- Lots of information, particularly on the Australian research scene, plus some really good stories.
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.