Chronic Fatigue Syndrome (ME/CFS) Patient Support Websites
United States ME/CFS Sites
Phoenix Rising Forums - this
sophisticated Forum program for CFS has become the place to go to discuss
treatments, research, news and events
ME-CFS Community Center -
created by Dan Moricoli, the ME-CFS Community Center boasts a mix of blogs,
message boards, videos, etc. that is unmatched in the CFS community. Check it
out.
CFIDS Association of America (CAA) - The
U.S. professional national advocacy and support group; lots of information; a
frequent Webinar series with top ME/CFS professional, an innovative Research
Initiative, a patient biobank, Facebook site, etc. easily the most active CFS
organization in the world; join them, donate
to them and use their website.
Prohealth is one of the busiest chronic
fatigue syndrome (ME/CFS) site on the web. Prohealth, 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 on ME/CFS.
Don't miss it.
Co-Cure - the
major hub for chronic fatigue syndrome (ME/CFS) information. There's always
something new on Co-cure (Cooperate and Communicate for a Cure).
Resources
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Whittemore-Peterson Neuro-Immune
Institute - The first state CFS Research Institute ever - built in Nevada
with the assistance of the Whittemores and the notable Dr. Peterson. An amazing
accomplishment - you can find information on XMRV and the Institute here.
The DFW CFS/ME and Fibromyalgia Information
Distribution Services - Lori Fidler has quickly built up the
DFW CFS/ME and FM IDS into a fantastic resource hub for ME/CFS and FM patients.
Contains forums as well. One of my personal favorites.
Fighting Fatigue
is an active, beautifully put together website with easy to understand articles
and lots of resources and links.
FM/CFS/ME Resources - Clear,
concise, attractive, very informative website with an excellent newsletter, a treatment
section, disability information on 8 different countries (!) and a world-wide ME/CFS
doctors database (!).
OFFER: the Organization for Fatigue and Fibromyalgia
Education and Research is a dynamic Salt Lake City organization created
by Dr. Lucinda Bateman. This website offers many excellent videos, and electronic
newsletter and more.
Put together by someone with CFS and MCS for 15 years the
Environmental Illness Resource has just what its name implies,
lots of resources including products for sale that may be helpful for ME/CFS,
MCS, fibromyalgia and other diseases.
P.A.N.D.O.R.A. this Miami advocacy
founded by Marly Silverman has quickly become one of the most active
advocacy groups in the U.S. Among others it sponsored the highly successful 2007
P.A.N.D.O.R.A./IACFS Patient Conference (click
here and here). For a Phoenix
Rising interview with it's founder click here.
The New Jersey CFIDS Association
sponsors conferences, has regular speakers, a doctor referral list, and information
on how to diagnose and treat CFS. The originator of the Consensus CFS Treatment
Manual now being used in other states, the NJCFA is hands down the most effective
state CFS advocacy group in the United States.
There is no more important issue for CFS patients than research
funding. Craig Maupin of the CFIDS Report
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 is an informative
website focused on myalgic encephalomyelitis
The
Dallas Fort Worth CFIDS site is the central hub for information on
Dr. Cheney.
The Rocky Mountain CFIDS/FMS Association
boasts an online newsletter, basic information on ME/CFS and, if you're near
Denver and an active seminar series.
The Wisconsin Chronic Fatigue Syndrome Association
is one of the oldest extant CFS support groups. It offers a quarterly newsletter,
discussion forum, phone support and more. Read an interview
with WCFSA President Pat Fero.
IACFS/ME - this website from
professional society of CFS Researchers contains information on CFS management,
drugs, the definition issues and more. The IACFS/ME puts on the bi-annual
International Conferences for CFS. Join this organization to assist them in
helping us increase research funding and opportunities.
CPN.HELP charts provides support for CFS,
MS and other patients who have Chlamydiae Pneumoniae infection. Diana's story on
the Phoenix Rising website charts how one longtime CFS patient with CPN infection
completely recovered. Lots of information put together in an attractive way.
United Kingdom and European ME/CFS Sites
MERUK (Myalgic Encephalitis Research United Kingdom)
offers patient friendly synopses of recent research by this research group and others.
What a boon it is when researchers take the time to explain difficult medical issues
to patients. The researchers associated with MERGE are engaged in some of the most
interesting research being done on CFS right now.
Get M.E. information at the ME ActionUK
Association for Young People with ME (AYME)
is a very attractive UK site for young people
The Overton Studio's Trust, established
by Dr. Michael Midgley is UK Christian Charity focusing on the power of therapeutic
thinking (peaceful, loving, caring) to increase ME/CFS patients well-being.
Irish ME Trust - a excellent Irish resource for
ME/CFS. On the web since 1989.
CFSResearch: Explore a large
collection of research articles on Chronic Fatigue Syndrome, Fibromyalgia and
related disorder from a variety of medical journals.
ESME - is an European organization of ME/CFS
professionals that is designed to provide a 'think-tank' for issues pertaining
to ME/CFS
Canadian ME/CFS Sites
FM-CFS Canada leads a national coalition
of nearly 100 FM/CFS support groups. It's bi-lingual website contains an enormous
amount of information including complete support group lists, economic analyses,
research information, a media center, a National Action Plan, a legal center,
question and answer pages, patient stories and more!
The Canadian websites are a great resource for information on the
Myalgic Encephalopmyelitis (M.E)./Chronic Fatigue Syndrome debate. Dr. Byron
Hyde, a Canadian physician has been involved in M.E. treatment/advocacy for many
years. Check out his
Nightingale Research Foundation site and the
National ME/FM Action Network with its legal and medical research packages and the
Ontario Myalgic Encephalomyelitis
group.
Australia ME/CFS Sites
The top Aussie website ME/CFS (SA) has
excellent patient friendly papers and lots of links to other sites.
The Canberra Fibromyalgia and
Chronic Fatigue Syndrome Pages is a beautifully put together site with lots
of information, particularly on the Australian research scene, plus some really
good stories.
MEsite - The Danes have put together
a professional, frequently updated site.
Other Sites
ME India - the first Indian ME/CFS website
boasts beautiful graphics
ME Malta - a very nicely
put together regularly updated site from Malta
There are some excellent Lyme disease sites. They include the
Lyme Disease Association, the
California Lyme Disease Association, International
Lyme and Associated Diseases Society and the Lyme
Disease Network.
Read about one person's success (yes, success) story in Chronic Fatigue Syndrome 'A Success Story'.
Vitamin D was critical to Frank's success. He lays it out in a detailed and responsible
fashion. A fascinating story.
If you, like many other CFS patients have stomach problems or irritable
bowel syndrome, be sure to check out a very informative (and quite striking looking)
site with regular updates called
Irritable Bowel Syndrome and Treatment.
Check out
Angelfire, an excellent MCS site with much information
and many links for those with this problem.