- Catharsis
Newsmagazines gopher server
- Back issues only--last issue was published in June 1995.
- Chronic
Fatigue Syndrome Village
- The CFS Village
The small site is devoted to providing the CFS online community
with a means of learning more about their friends on the Net.
List of several web pages of PWCs, and some resources.
- Dory
Miles' Page
- Dory's experience with CFS. Includes a wealth of information,
including clickable email addresses for senators
and congresspeople;
a
word search; a
soap opera title humor twist; humorous
satire on the day in the life of a CFIDS sufferer.
- Jolie's
Poem
- Jolie's poem, with her own graphic and choice of music.
- Julie
Habers' story: Coping when life is undercut by a neverending 'flu'
- Brooklyn Heights NY resident Julie Habers was a rising star
at Shearson Lehman when her health suddenly was shattered by the
poorly understood, and she says misnamed, illness called Chronic
Fatigue Immune Dysfunction Syndrome. Slowly, and by dint of a
degree of effort she never would have thought necessary before,
she has put together an account of her life as it is now.
- Mary
Schweitzer's Web Site
- Mary Schweitzer, with a PhD, has been forced to stop teaching
due to CFS. She includes some of her essays on CFS and her scholarly
works here.
- The Michelle
Akers Page
- Michelle Akers, the U.S. soccer team playser, a forward and
midfielder, in the last Olympics, has CFIDS.
- Sue
Klaus's CFS Site
- Including the "Chronic Malcontent Quarterly," a CFIDS section,
and her well-known article (reprinted here) entitled "How to Kill
a Friend."
- People
page / CFS IRC
- List with short bios--including some home pages--of almost a
hundred PWCs who participate in the #CFS IRC channel, with information
on how to submit a bio, and where you can post a 1MB web site
for free.
- UK-ME-Web
- Includes homepages of PWCs, a review of Osler's Web,
and Stories,
Essays, and Poems from PWCs.
- Valley
of Shadows
- A book-length story about her life with CFIDS, by Phillis Griffiths
[ Top | Personal
Accounts | General Information ]
[ Scholarly Articles | Organizations
]
[ General Disability Information | Print
Resources ]
General Information and FAQs
- Ampligen
Questionnaire
- An ampligen questionnaire for patients giving information to
patients.
- Brainfog
and its Significance
- "One of the first things that makes us realize that there is
something wrong with us is the inability to perform intellectually
like we once did. We seemingly accept the increasing pain, the
muscles spasms, the insomnia, but when we keep forgetting our
own phone number, red flags go up. ..."
- Camilla's
CFS/Fibromyalgia Articles & Links
- Lots of scholarly articles and information on "why CFIDS is
not AIDS."
- CAMEO
Survey
- Their goal is to survey as many diagnosed PWC as possible to
get as accurate of a picture as possible of life with CFIDS. The
purpose of the CAMEO Survey is to gather information that all
CFIDS advocates can use for awareness projects on all levels.
- The
Cheney Clinic Information Services
- Lots of information and resources from one of the first physicians
to recognize CFS as an illness--a CFS diagnostic test, a FAQ,
an online consultation service, resources on the net, seminars,
supplements, and pharmaceutical sales.
- The CFIDS/ME
Site
- An informational website by and for people with the illness
Chronic Fatigue and Immune Dysfunction Syndrome. Run by Mary Schweitzer.
- CFS
Audio on the Net
- This site is a presentation of audio files dealing with Chronic
Fatigue Syndrome taken from such places as CFS conferences and
from the CFS Radio Show. Nead RealAudio or TrueSpeech plugins.
- The
CFS Bookstore
- Offers books to individuals with CFS via Amazon.com at discounts
of 20 to 40% off the cover price. To provide an accessible resource
for people to find the books they need.
- CFS/CFIDS/FM/ME
Information
- A list of links including medical information and the latest
research.
- CFS
Index of FAQs
- A list of all the FAQs with links to them.
- CFS/ME
Electronic Resources
- The CFS/ME Computer Networking Project--A Guide to the Many
Information Resources Available via Computer for CFS/ME. A bit
old (Oct 1, 1994, second edition) but includes a lot of good information.
- CFS/ME
Information
- Has everything:
News
Information files
Discussion Groups
CFS-related web pages
Gateway to the rest of the world
- CFS
Network Japan
- Japansese CFS site (note - site is in Japanese)
- CFS-NEWS
Directory
- CFS-News--CFS Electronic Newsletter.
- Change
the Name Survey
- Rationale, survey information, etc. on changing the name, "Chronic
Fatigue Syndrome" to something less stigmatizing and more factually
descriptive.
- Chronic
Fatigue Immune Dysfunction Syndrome
- Information from Stephen B. Edelson, MD.
Good basic medical information, fairly detailed.
- Chronic
Fatigue Syndrome--NIH Fact Sheet
- Chronic
Fatigue Syndrome / Sleep / The immune system
- A transcript of the Australian Broadcast Company's broadcast
on CFIDS.
- Chronic
Illnet CFS page
- Includes information on Neenyah Ostrom's book, America's
Biggest Cover-Up: 50 More Things Everyone Should Know About The
Chronic Fatigue Syndrome Epidemic and its Link to AIDS.
- Clothing
for PWCs and Fibromyalgia Sufferers
- Information on where to find comfortable clothing.
- The
CDC's Facts About Chronic Fatigue Syndrome
- Background, clinical aspects and demographics, possible causes,
diagnosis, abnormalities of the immune system, downloadable articles,
and an article on medications, herbal preparations, and miscellaneous
treatments that have been tried for CFS, including a list of side
effects.
- Colorado
Health Net chronic pain site
- Includes Cecil Maranville's story about his own fibromyalgia
pain, in addition to other items.
- Computer
Software for ME Sufferers
- links to useful software like Speech Synthesisers, Web page
editors, Website capture programs etc. The creator hopes that
over time, it will evolve into a massive resource of useful programs
for M.E. sufferers.
- For
Parents of Sick and Worn-Out Children (CFS, CFIDS, NMH, ME, FM,
etc.)
- Good page with information on kids and CFS.
- Fibromyalgia
News
- Lots of info, including a section where you can ask
a question of an MD, Derek Enlander, and a Pen
Pal listing site.
- Full
Text of US CDC Definition of CFS
- The Chronic Fatigue Syndrome: A Comprehensive Approach to Its
Definition and Study.
- Gopher
Menu from St. John's EDU--contains Catharsis & Newswire
- Link to Catharsis, CFS NewsWire and CFS-File (archived files)
- Harry
Bosma's CFS Dream Page
- Look on the lower left frame index for CFS DREAMS. He gives
some of his own examples, and also talks about CFS and the way
his dreams are affected.
- Immune
Mailing List Home Page
- Home page for the Immune Mailing List--for people with immune-related
problems.
- Massage
Therapy Web Central
- ASSOCIATED MTs NEAR YOU(sm). A comprehensive resource center
for professional-quality massage therapy complete with referral
directory of licensed massage therapists everywhere. Discover
the difference! Sponsored by Quality of Work Life Services.
- ME-WEB
- ME-WEB is the biggest site for CFS in the world (more than 1000
CFS links).
- Mental
Health Net - Self-help Chronic Fatigue Resources
- Information on WWW pages, Newsgroups, Mailing lists, and other
resources.
- MAY
12, CFS/ME Awarness Day Action Information
- May 12th each year is International CFS/ME Awareness Day.
This page describes the 1995 activities.
Contains information on Florence Nightingale, who suffered from
a CFIDS-like debilitating illness during the last part of her
life.
- M.E.S.S.
Page
- M. E. Support Services - Dedicated to the enlightenment of the
ignorant of ME/CFS and converting that ignorance into knowledge
of the clinical and scientific aspects of ME/CFS.
- Mining
Company CFIDS site
- Chat, Bulletin Boards, and a ton of links! Lisa Lorden is your
guide.
- Our
Circle of Friends: Lupus and Autoimmune Diseases
- An incredible list of links.
- David's
ME-CFS site
- A UK site - Articles, Information, Medical Updates, Support
Information.
- New-Age
Science or Pseudoscience?
- Maryann Spurgin's essay/review of the Demitrack-Abbey book.
- Osler's
Web on tape
- Information on how to get Osler's Web, by Hillary
Johnson, on tape.
- Robyn's
Chronic Fatigue and Immune Dysfunction Syndrome Index
- Has won several awards for content. Contains info on CFIDS,
CFS, NE, Gulf War Syndrome, NMH, etc.
- The
River's CFS, CFIDS, Fibromyalgia and GWS Links
- A comprehensive set of links to CFIDS sites.
- Sandy
Shaw's page--Chronic Fatigue Syndrome
- Reference guide and abstract on definition of CFS
Newsletters
Gov't agencies
Other WWW pages
- Sapient Health Network
- Includes information, message boards, and chat centered around
Fibromyalgia and CFIDS.
- Topics,
Rules and Information for CFS-L / alt.med.cfs
- Newsgroup information and rules.
[ Top | Personal
Accounts | General Information ]
[ Scholarly Articles | Organizations
]
[ General Disability Information | Print
Resources ]
- Cheney
and Lapp - An Assertive Approach to Diagnosis of CFS
- Scholarly article on CFS diagnosis> [Ed. note - 5/30/98 - site
is "temporarily down"]
- CFS
and Pain Research
- The University of Newcastle's Collaborative Pain Research Unit
which has been investigating CFS diagnostic tests.
- Chronic
Illnet Report 6
- Big listing of CFS scholarly publications.
- Good page, a comprehensive list of links to ADA and Disability
related URLs.
- Four
Stage Approach to CFS
- Scholarly article:
A Systematic, Four-Stage, Progressive Model for Mapping the CFIDS
Experience
by Patricia A. Fennell, CSW, Albany, NY
Covers Chronicity, Stigmatization, Disruption of Developmental
Life Processes, and Pre-Existing Conditions. [Ed. note - 5/30/98
- site is "temporarily down"]
- The
MMPI-2 CFS Profile, by Linda Miller Iger PhD
- Scholarly article describing the typical PWC profile on the
MMPI, a common diagnostic instrument used by psychologists. [Ed.
note - 5/30/98 - site is "temporarily down"]
- MRI
brain images: Chronic Fatigue Syndrome
- From Harvard Med school: MRI and SPECT perfusion images of CFS
brain showing hypoperfusion of left cerebral hemisphere as well
as left cerebellum.
- Dr.
Robert Suhadolnik
- Information on the CFS researcher.
- RNase
L: Biochemical Evidence for a Novel Low Molecular Weight 2-5A-Dependent
RNase L in Chronic Fatigue Syndrome
- Information on the newly-discovered enzyme, which may eventually
lead the way to a diagnostic marker.
- Understanding
Aerobic and Anaerobic Exercise
- A posting from a CFS discussion list describing some medical
mechanisms (mitochondrial alterations) which underly PWCs' lack
of energy. [Ed. note - 5/30/98 - site is "temporarily down"]
- Ward's
Diagnostic Project Website
- Various full-text articles dealing with diagnostic issues, as
well as a message board to make suggestions about the site.
[ Top | Personal
Accounts | General Information ]
[ Scholarly Articles | Organizations
]
[ General Disability Information | Print
Resources ]
- The
American Association for Chronic Fatigue Syndrome - AACFS
- An organization of medical professionals, research scientists,
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. Also a twin research study at http://weber.u.washington.edu/~dedra/twins.html
- The CFIDS Association
of America
- The US's leading charitable organization dedicated to conquering
CFS.
- The Chronic
Syndrome Support Association, Inc. (CCSA)
- The CCSA, a non-profit corporation, was established to spread
awareness of FMS, CFS, GWS, MCSS, and MPS, with a website, a free
pamphlet for general distribution, and The Syndrome Sentinel,
a quarterly newsletter.
- CO-CURE
Home Page
- The name "Co-Cure" stands for "Co-operate and Communicate for
a Cure." The mailing list has been established with the goal of
furthering co-operative efforts towards finding the cure for the
illness commonly referred to as Chronic Fatigue Syndrome (CFS)
and Fibromyalgia (FM). Includes articles and posts from the mailing
list.
- The CFIDS
Youth Alliance
- For information on CFIDS youth action. Back-issues of their
quarterly newsletter, highlights of the latest news about CFIDS
in kids, information about the programs and services of CFIDS
Youth Alliance, articles organized by medical, educational and
caregiving topics, and more.
- Good
Deeds Foundation, Inc.
- The Good Deeds Foundation, Inc. was extablished in May 1996
to assist those individuals suffering from Chronic Fatigue and
Immune Dysfunction Syndrome (CFIDS), as well as their families.
- M.E.
Association (UK)
- Support for all affected by ME. UK site.
- The
M.E./Chronic Fatigue Syndrome Society of Victoria Inc.
- A non-profit charitable organisation dedicated to serving the
Chronic Fatigue Syndrome Community in Victoria and Tasmania.
- M.E.
Publicity Campaign
- M.E.P.C. is solely a pressure group, not a support group, or
a sufferer information service. All that matters here is campaigning
to those who DON'T have M.E. - to tell them what it is - using
the net.
- Medical
Professional with CFS
- An organization of medical professionals with CFS. This group
was formed in 1993 by Gail Dahlen and Meghan Shannon to give MPWC's
an opportunity to coordinate their efforts, support each other,
and make a difference for all PWC's.
- National
CFIDS Foundation
- Two paragraphs including their address and what they're all
about.
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 chronic fatigue
and immune dysfunction (CFIDS) and related illnesses including
fibromyalgia syndrome (FMS), gulf war illness (GWS), and multiple
chemical sensitivity (MCS). A growing educational site - hopes
to add guest appearance chats soon.
- CFIDS
support site for Orange County, CA
- Meeting information, links, etc.
- R.E.S.C.I.N.D.'s
Web Site
- Repealing Existing Stereotypes about Chronic Immunological and
Neurological Diseases. Includes scholarly links.
- SASYFRAS
Discussion/Support List
- Information on how to join the mailing list.
- WECAN
- World Electronic CFIDS/ME Network
- Mission: to campaign against negative bias and irresponsibility
regarding CFIDS/ME; to inform and educate about CFIDS/ME. Links
to other sites.
[ Top | Personal
Accounts | General Information ]
[ Scholarly Articles | Organizations
]
[ General Disability Information | Print
Resources ]
- ADA
& Disability Information
- Comprehensive list of ADA-related links.
- Fight Managed
Care
- Dedicated to the fight against managed care, and is intended to
be a resource for people working to improve health care delivery
in America. All interested parties, whether politically progressive
or conservative, should find this site useful.
- Gen'l
Information About Disability--Social Security information
- General disability information.
- National Organization
of Social Security Claimants' Representatives
- A resource for members, and for visitors who need help or information
about Social Security benefit programs and obtaining representation.
- Society for
Disability Studies
- Available on this site is general information about SDS -- its
history, Board of Directors, membership, publications, and annual
meetings. The call for papers for the 1998 meeting is also posted
on this site.
- Three Welfare-Related Sites
- http://www.naco.org/nich/index.htm
http://www.nga.org/Welfare/WelfareRecentDevelopments.htm
http://www.welfareinfo.org/sites.htm
Books in bold are highly recommended by PWCs.Purchase
them through our bookstore in association with Amazon.com
- Ali, Majid - The Canary and Chronic Fatigue - 1994
- Bell, David S. - The Doctor's Guide to Chronic Fatigue Syndrome:
Understanding, Treating and Living with CFIDS - 1994 (paperback)
- Berne, Katrina - Running on Empty: Living with Chronic Fatigue
Immune Dysfunction Syndrome - 1992 (paperback
reprint available approx December 99)
- Chopra, Deepak - Boundless Energy: The Complete Mind/Body Program
for Overcoming Chronic Fatigue - 1995
- Feiden, Karyn - Hope and Help for Chronic Fatigue Syndrome:
The Official Guide of the CFS/CFIDS Network - 1992
- Friedberg, Fred - Coping with Chronic Fatigue Syndrome: Nine
Things You Can Do -1995
- Hale, Mary - The Chronic Fatigue Syndrome Cookbook: Delicious
and Wellness-Enhancing Recipes Created Especially for CFS Sufferers
- 1994
- Hale, Mary - The Immune Support Cookbook: Easy, Delicious Recipes
to Support Your Health if You're HIV Positive or Suffer from CFIDS,
Cancer or Other Degenerative Diseases - 1995
- Johnson, Hillary - Osler's Web: Inside the Labryinth of
the Chronic Fatigue Syndrome Epidemic - 1996 (hardcover)
(paperback)
- Lark, Susan M. - Dr. Susan Lark's Chronic Fatigue Self Help
Book: Effective Solutions for Conditions Associated with Chronic
Fatigue Syndrome - 1995
- Lind-Kyle, Patt - When Sleeping Beauty Wakes Up - 1992
- Murray, Michael T. - Chronic Fatigue Syndrome: How You Can
Benefit from Diet, Vitamins, Minerals,Herbs, Exercise and Other
Natural Methods - 1994
- Ostrom, Neenyah - 50 Things You Should Know About the Chronic
Fatigue Syndrome Epidemic - 1992
- Wilkinson, Steve - Chronic Fatigue Syndrome: A Natural Healing
Guide - 1990
Fibromyalgia Resources
[ Top | Personal
Accounts | General Information ]
[ Scholarly Articles | Organizations
]
[ General Disability Information | Print
Resources ]
[ Table of Contents | Action
Page ]
|
