CFS-related
links and information
- CFS Organisations
- Advocacy pages
- CFS Information
- CFS Newsletters and Zines
- Pages by Government Agencies
CFS Organisations
The Alison Hunter Memorial Foundation Site contains up-to-date info on CFS issues, children and advocacy, details of the three Scientific meetings on CFS (held in 1998, 1999 and 2001) and hundreds of research papers on CFS.The American Association for Chronic Fatigue Syndrome (AACFS) is a non-profit organization of research scientists, physicians, licensed medical healthcare professionals, and other individuals and institutions interested in promoting the stimulation, coordination, and exchange of ideas for CFS research and patient care as well as periodic reviews of current clinical, research and treatment ideas on CFS for the benefit of CFS patients and others.
AYME is the Associtation for Youth with Myalgic Encephalomyelitis, based in England.
The CFIDS Association of America is a charitable organization dedicated to conquering chronic fatigue and immune dysfunction syndrome (CFIDS).
The National CFIDS Foundation in America was founded in February 1997 by two 14 year old activists of the CFIDS movement. The goals of the Foundation are to help fund medical research to expedite a treatment and eventual cure, to provide information, education, and support to those people who have CFIDS and related illnesses including FMS, GWS, and MCS.
The National ME/FM Action Network of Canada has a youth site which provides a parent's area, a sourcebook for teachers, and articles on medical questions about ME/FM - one in particular on diet which I appreciate very much, having been down the dreary "all food is bad for you except parsley and soya cheese" path.
The Worldwide
Electronic CFIDS/ME Action Network (WECAN).
Two Australian links: The Northern Rivers ME/CFS Society web page, with details of supports groups in northern NSW and southern Queensland; and the ME Society of NSW has a web page, with info on becoming a member and services available.
RESCIND
("Repeal Existing Stereotypes about Chronic, Immunological and Neurological
Diseases"), Inc. is a non- profit 501(c) 3 corporation. RESCIND's primary goal
is to change the name "CFS" to something more accurate and less pejorative.
Advocacy pages
Listening to CFIDS: Works by PWCs and others who care has, among other things, a postcard utility where you can spread CFS awarness by sending postcards to others on the net.Bluemountains.com now has a CFS card for spreading awarness on May 12th.
Lisa Merriman has created an animated simulation of surviving days with CFS called CFS Daze. A maze full of activities represents "getting through each day", and doing too much sparks a relapse.
An excellent site designed for young disabled people coping with life and school, called When Chronic Illness...or Some Other Medical Problem...Goes to School, has been created by Joan Fleitas. The words of kids, teeangers and adults fully explain the difficulties of life as a young disabled person. If you're a healthy person feeling intimidated by the illness of a friend or relative, I recommend you visit this site and read the testimony of adults looking back on their experiences, to understand what a disabled person goes through.
CFS Information
The CAMEO Survey needs PWCs to fill out its questionnaire so accurate information on the symptomology of CFS can be gathered.Moira Smith's Canberra Fibromyalgia and Chronic Fatigue Syndrome Page contains information on how to find Australian and New Zealand support groups, how to join various mailing lists and newsgroups, and a huge collection of links to useful websites all over the world where people can find information on the symptoms and management of FM, CFS and all the rest. It also contains book extracts on how to manage your FM or CFS; the text of an excellent booklet from the ACT ME-CFS Society on Coping with CFS; factual articles about what CFS and FM are; personal stories; a page of links to articles by people like Drs Cheney and Lapp, including stuff about managing the illnesses and their symptoms; plus a page of links to articles on chronic pain management.
Remedyfind is an objective, non-sponsored and internationally-oriented web site that allows patients and healthcare practitioners to rate and review the effectiveness of the various treatments they've used to treat CFS/CFIDS/M.E.
Gossamer's CFS page has an Open Letter to non CFS Sufferers, where the problems and thoughts of people with CFS are explained.
From the M.E. & F.M. Manual are Charts showing the differences between ME and depression, the difference between ME and FM, effects and recovery rates, and the percentage of people able to return to work full- or part-time.
CFS Newsletters and Zines
Fog Clutter is a 'zine for writers with CFIDS. Poems and stories are accepted from all PWCs.
Pages by Government Agencies
The National Institute of Allergies and Infectios Diseases has created a page of factsheets and brochures at their Chronic Fatigue Syndrome Information Page. It contains an overview of the illnesses and current theories about its cause.The Centre for Disease Control (CDC) has a CFS page with succinct information on who gets CFS, popular treatments, ideas on its cause and more.
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