Web Sites, Resources, and Further Information

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More Personal Accounts by PWCs

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.

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

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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.

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:
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 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
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.

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Scholarly Articles

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.

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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.

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General Disability Information

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

Print Resources

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

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