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The 25% M.E. Group - for the severely affected by Myalgic Encephalomyeltis, from the UK.
" ... approximately 25% of those affected will go on to develop severe ME which is an extremely debilitating illness, sometimes lasting for years, in some cases, even decades, often rendering the sufferer completely housebound, wheelchair & bedbound and dependent upon carers for their everyday needs." Includes some very useful and challenging information, including this PDF article from the Nursing Standard of February 2005, Supporting People with Severe ME.The About.com Fibromyalgia & Chronic Fatigue Syndrome site. Regularly updated, this is a good source of news, interesting articles and 'hand-picked' links. There are discussion forums for both CFS and FM, and a 24 hour chat room where several chat groups meet, including one for teens.
Action for ME - from the UK. Includes information for patients and professionals.
Association of Youth with M.E (AYME) Homepage. "We hope you will find these pages interesting, whether you are a young person who has M.E, a parent or carer, one of our members or someone who wants to find out more." - from the UK. Includes Information for Teachers.
Axford's Abode - "in-depth issues and information on ME/CFS". Unfriendly to text-only browsing and often difficult to navigate, but contains important and frequently updated information challenging the CBT/graded exercise model of CFS treatment. Includes the writings of Dr E M Goudsmit.
But You Dont Look Sick? - "The stories behind the smiles" - a website about living with Lupus invisible disease. Read about the "spoons" method of explaining your illness to others ...
CFIDS Association of America - recently revamped, very good site with lots of information and resources for patients, families, youth, and medical professionals. Includes research, treatment and an archive of articles from The CFIDS Chronicle.
CFIDS/Fibromyalgia Self-Help - "a non-profit organization that offers low-cost self-help courses over the Internet and other resources for people with CFIDS, fibromyalgia and related illnesses" based on Bruce Campbell's work. The website also offers an articles archive with sensible, inspirational and practical advice from sufferers on coping with and managing chronic illness. Read Ten Keys to Successful Coping - an overview of Bruce's approach. (Courses based on this approach and using Bruce Campbell's book are now held in Australia - more info.)
The CFIDS Report - "Cutting Edge News and Commentary for the CFIDS Community" - a website edited by Craig Maupin. Includes hot topics, news, and some very good articles. Recommended
CFS Caregivers - resources for family and carers. Includes FAQ, Stress Test, and information about the CFS-CARE mailing list.
CFS Home Page - from the USA Government Centers for Disease Control, Atlanta. Information for health professionals and patients, including the official CDC Case Definition (diagnostic criteria for use in selecting patients for research).
CFS Information International - by Mette Marie Andersen, MD. Informed overviews of CFS and FMS research and treatment - including Ampligen - world news, related conditions, current issues and the politics of CFS.
CFSResearch.org - "a nonprofit website providing Free medical articles on Chronic Fatigue Syndrome, Mycoplasma, Chlamydia and Rickettsia." Features articles by Paul Cheney, Garth Nicholson, Cecile Jardin, etc.
Roger Burns' CFS-NEWS website in Washington D.C. - general information, FAQs, resources, Doctors CFS Page and the CFS Electronic Newsletter. Not up to date (last edition was September 2001) but a good source of background material.
CFS in Youth Home Page from the CFIDS Association - medical information, resources, and many articles from the CFIDS Chronicle about CFIDS in adolescence. Includes A Guidebook By and For Young People with CFIDS (YPWCs).
CFS PHOENIX - 'Committed to Exploring the TREATMENTS and EXPERIENCES of and the RESEARCH into the CFS PATIENT'. Also home of the Phoenix Rising newsletter.
Chronic Fatigue Syndrome: Understanding the Illness, its Management and Ttreatment - Dr David G Smith's website from the UK - includes Fibromyalgia.
Co-Cure CFS and FM Information Exchange forum - for news about the latest research, conferences, media coverage and events. You can join the mailing list and get news posts by email, or check out the archives for posts on particular topics. The website contains interesting articles, great resources such as the CFS/FM Good Doctor List, and a Message Board.
Fibromyalgia Resources at Suite101.com - "support, coping tips, and information - not only for FMers - but for concerned family members and friends as well", edited by Tamara Peters.
Dr Devin Starlanyl's Fibromyalgia & Chronic Myofascial Pain Syndrome web site. This site is a must, with a wealth of authoritative information for both patients and doctors. Includes "Information for relatives and companions", an annotated list of commonly prescribed medications, a series of handouts for various medical specialities entitled "Information for your health care team", and more. Read an extract from Devin's first book here on my site.
Fibro-Friends- "Friends Helping Friends" ... "Our goal is to provide quality, un-biased information to help you find what helps you with your Fibromyalgia Syndrome, Chronic Fatigue Syndrome, and Myofascial Pain Syndrome ..... a place where you can go to find information and support without the need to wade through all of the irrelevant information and advertisements usually provided by larger websites". The group is based in Florida, USA, but anyone can read the articles and join the forums.
The Fibromyalgia Companion - "to motivate and support people living with FMS, inspiring them to live life to the fullest".
Fibromyalgia, Insulin Resistance, and Diabetes: A Non-medical Approach - Information and Ideas from Miryam Ehrlich Williamson. Read an extract from Miryam's first book here on my site.
Chip Davis's FMS Community website: information on the Fibrom-L Email Discussion Group plus the latest news and information on FMS/CFS/GWS and other "umbrella" disorders. Includes news, links, books, organisations to contact, and tips for participating in mailing lists and newsgroups. You can join Fibrom-L from this site, and access Public and Member chat rooms and discussion boards. Affiliated with the Chronic Syndrome Support Association which offers patient resources, articles, news, information, and The Syndrome Sentinel newsletter.
FMS Global News.com - committed to uniting the "Global Fibromyalgia Community" and providing the most comprehensive source of news available. "Right now,." says Richard Usher, "there are many sites all over the place. I want to make this the one site you go to. We'll feature the latest news and support information all the time. People with fibromyalgia, medical professionals and anyone interested in the disease can come here to find out the latest on what's happening in research, medicine and support group activities." [June 2006]
HealingWell.com's Fibromyalgia Resource Center and Chronic Fatigue Syndrome Resource Center - compendium sites with articles, news, advice, chat and message forums.
ImmuneSupport.com from ProHealth - "World's largest FM and CFS website". News and articles, including many by respected physicians and researchers. This is a commercial site selling supplements and alternative remedies.
Lois Randall's excellent InfoMIN - Medical Information Network site for Chronic Pain, CFS, FMS and other Medical Resources is a large collection of useful and interesting links and material for patients and health care professionals. Includes advice for people applying for social security disability in USA.
Irritable Bowel Syndrome Treatment - UK website maintained by Sophie - "the place to find out about the therapies and medications for irritable bowel syndrome which can make our lives easier ... with opinions from real IBS sufferers".
Listening to CFIDS - "a forum for Persons with Chronic Fatigue and Immune Dysfunction Syndrome to speak from the heart . . about what their illness means to them". Includes a message board.
Living with Illness - Katrina Berne's site. Information about CFS and FM, and Katrina Berne's excellent books. Inside every sick person is a well person wondering what the hell happened.
Dr David Bell's Lyndonville News website - "support, advice, recognition, and information to persons with chronic fatigue syndrome (CFS), fibromyalgia (FM), myalgic encephalomyelitis (ME), and related, difficult to define, illnesses" from this well known CFS/FM practitioner, and a free download of his excellent book Faces of CFS. (read my review)
Marilyn J Kerr R.N.'s Lyme Disease/CFS/FM/MCS/GWS Information Pages - A very helpful site with lots of information about research, medications (including neurontin), treatments, theories about causes, and practical issues such as claiming benefits. Text only version available.
Melissa Kaplan's Chronic Neuroimmune Diseases - Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more... collection of information from a veteran activist. " The inability of a doctor to diagnose an emerging disease is evidence of a deficiency of the doctor rather than lack of cooperation in the patient."
MEActionUK - home of the MEActionUK mailing list, also has a collection of articles and information about ME and British advocacy and activist issues.
ME Free For All - "Trying to put all the pieces together" - for all those with an interest in M.E. - sufferers, their carers, doctors & researchers - to come together. UK website associated with Dr John Greensmith.
ME-NET and ME-Web - international CFS/ME resources from Europe. The ME-WEB library provides access to research databases.
M.E. International - a new website "created in response to the continued marginalisation of people suffering from Myalgic Encephalomyelitis" ..."After years of abuse, humiliation, marginalization and tragedy, 2004 is witness to a grass roots movement away from the control of self interest collectives and to follow where the peer reviewed research is heading."
M.E. Society of America - "an organization that seeks to promote understanding of the disease known as myalgic encephalomyelitis (M.E.), a multi-system disease adversely affecting the heart, brain, neuroendocrine, immune, and circulatory systems."
MEsite.dk - from Denmark, in English ... "information about different aspects of the disease Myalgic Encephalomyelitis (ME), defined by Ramsay et al, 1988" from Lajla Mark.
National CFIDS Foundation - information and research news from the USA.
National ME/FM Action Network - Canadian consumer organisation based in Ottawa, which has been doing important work coordinating the development of a clinical definition, and diagnostic and treatment protocols for CFS/ME/FM.
Fibromyalgia Information from the Medical ProfessionalsFoundation - articles by Dr Robert Bennett and colleagues.
Our FM/CFS World Inc. - links, articles, and resources, and an online discussion forum.
For Parents of Sick and Worn-Out Children - includes Why Children with CFS Are Often Overlooked, Schools and Education and advice on dealing with health professionals.
Dr. Poesnecker's Chronic Fatigue Home Web Page - about his theory that CFS and FM are "a condition of the neurohormonal and immune mechanisms of the body that produces a weakening of the body's ability to respond to stress of all kinds". Includes extracts from his new book Chronic Fatigue Unmasked 2000, and lots of sympathetic understanding.
Remedyfind - treatments rated and reviewed by sufferers. Add your rating ...
RESCIND Home Page - "Repeal Existing Stereotypes about Chronic, Immunological and Neurological Diseases" - the organisation that began the May 12th Awareness Day Blue Ribbon campaign.
Research on Chronic Fatigue Syndrome ( CFS ) / Mycoplasma /Chlamydia - Nico Vanden Eynde's website has information about Mycoplasmas, Chlamydia and Rickettsia infections and other aspects of treating CFS. There are many full-text articles here by well-known authors. Frame-free index.
The ShAsta CFIDS support group website has excellent information on CFS, FMS and related issues like exercise, fatigue, nutrition, and pain. It is also features a very useful collection of Mycoplasma resources.
Website of the book Stricken: Voices From the Hidden Epidemic of Chronic Fatigue Syndrome ... "Stricken is not only a collection of literary writings about the CFIDS epidemic, but a critique of the mythology and language surrounding an illness population and a collection of its untold stories."
Suite 101 Fibromyalgia articles .
The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief - the website for Clair Davies' wonderful book has useful info for FM and chronic myofascial pain sufferers. See, for example, the page on Fibromyalgia pain.
YPWC Writers Web - "young people with chronic illness write their lives". Includes articles by Aussie PWCs, Anelie Walsh and Farrah Tate.
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last revised 23 June 2006