CFS-related
links and information
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.
Lovely green sofa and
orange chair supplied to me by Eric
Henes.
Flashing lights
from Ann-S-Thesia: A Gallery
of Digital Delights, Ann-S-Thetics and Ann-i-mation. Free stuff for your page!