Guide to CFIDS Resources

Chronic Fatigue Syndrome (CFS) is also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). In England, Australia, and most other countries CFS is called Myalgic Encephalomyelitis or Myalgic Encephalopathy (M.E.).


INDEX

MAINE SUPPORT GROUPS

CFIDS ORGANIZATIONS

ONLINE ORGANIZATIONS & RESOURCE & INFORMATION SITES

PHYSICIANS & RESEARCHERS

GOVERNMENT LINKS & RESOURCES

SSA DISABILITY BENEFITS AND CFIDS

ACTIVISM/ADVOCACY

YOUTH

MEDICAL

INTERNATIONAL

ON-LINE RESOURCES, INFO, and SUPPORT

BIBLIOGRAPHY


MAINE SUPPORT GROUPS

Augusta, ME CFIDS/FM
Meets 3rd Sat. of each month, 10 - 11:30 AM
Fay Emery (207) 549-5029

Bangor CFIDS/FM
Fran Bouchard 207-941-8417

Lewiston CFIDS/FM
telephone support only: Sheila Bacon 207-946-5567

Portland CFIDS/FM
Sue Bertin 207-839-8434

CFIDS ORGANIZATIONS

The CFIDS Association of America
The comprehensive and authoritative site of the largest CFIDS organization in the U.S. CAA's goals are to build recognition of CFIDS as a serious medical disorder; advocate to the government; stimulate research; educate health-care providers about CFIDS; and provide information to persons with CFIDS (PWCs). The Web site provides information for PWCs, family and friends, youth with CFIDS, medical professionals, and the media. Many books, videos, tapes, and other educational materials are available. Provides resources for legal and medical issues, and support groups. Newsletter is The CFIDS Chronicle.
http://www.cfids.org

Massachusetts CFIDS Association
The Mass. CFIDS & FM Association is dedicated to supporting research, promoting medical and public education, and advocacy and support services for persons with CFIDS or Fibromyalgia Syndrome (FMS). The Association provides disability information, advocacy, support group and doctor referral, a lending library of books and tapes, as well as relevant, news, lectures, and research funding. Newsletter is The Update.
http://www.masscfids.org

National CFIDS Foundation
NCF funds medical research toward treatment and a cure and provides information, education, and support to PWCs and those with related illnesses such as Gulf War Illness, FMS, multiple chemical sensitivity. NCF hosts conferences and lectures, and provides an online library. The newsletter is The National Forum.
http://www.ncf-net.org/

Seacoast Area Fibromyalgia/CFIDS/Chronic Pain Support Groups
Support groups, telephone support, and lending library for people in New Hampshire and Maine. Meetings and/or resource people are in New Durham, Peterborough, and Rochester, NH and in Saco and North Berwick, Maine.
http://www.seacoastfms.org/

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ONLINE ORGANIZATIONS & RESOURCE & INFORMATION SITES

CFS Guide at About.com
Extensive reader-friendly information on CFS, fibromyalgia, advocacy, complementary medicine, coping strategies, health news, medications, personal stories, related disorders, communication and relationships, research, treatments, support, and Social Security. Also provides information in Spanish (en Español).
http://chronicfatigue.about.com/

The CFIDS/M.E. Information Page
A comprehensive listing of resources, including general information about CFIDS and FMS, diagnosing and treating CFIDS and FMS, medical research and references, RnaseL Enzyme Dysfunction Disease (R.E.D.D.), activist Information, organizations & discussion lists on the Internet, state and local support groups, disability information, commercial laboratories & other commercial sites of interest, links to information about related diseases and general medical information, and a glossary of acronyms.
http://www.cfids-me.org/

Co-Cure Information Exchange
"Co-Cure" stands for "Cooperate and Communicate for a Cure." There is a Co-Cure listserv, Web ring, Web site,archives, and lots of links and information relating to CFS, FMS, and related illnesses. Provides basic information on CFS and FMS, including información básica en español, a list of doctors, research updates and updates on CFS clinical theory and practice, activism links, a "reading room" of reading materials on CFS, FM, MCS, GWS, and auto-immune conditions, containing links to online documents, book reviews, editorials, and abstracts.
http://www.co-cure.org/

Listening to CFIDS
A very thorough and reader-friendly Web site. Includes CFIDS facts and information on the case definition, medical issues, and coping; along with personal stories and essays, poetry, art, humor, activism, news, pen pal and relationship search, message boards, and a bookstore.
http://wwcoco.com/cfids/toc.html

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PHYSICIANS & RESEARCHERS

International Association for CFS/ME
The mission of the IACFS/ME is to promote, stimulate and coordinate the exchange of ideas related to CFS, ME and fibromyalgia (FM) research, patient care and treatment. In addition, the IACFS/ME periodically reviews the current research and treatment literature and media reports for the benefit of scientists, clinicians and patients. The IACFS/ME also conducts and/or participates in local, national, and international scientific conferences in order to promote and evaluate new research and to encourage future research ventures and cooperative activities to advance scientific and clinical knowledge of these illnesses.
http://www.iacfsme.org/


Dr. Charles Lapp
Dr. Lapp is an internationally recognized expert in CFIDS. His Hunter-Hopkins Center site includes his biography, and information on his treatment approach, newsletter, Ampligen treatment, CFS conference summaries, current research, and links to other CFS/FMS sites.
http://www.drlapp.net/

DePaul University Center for Community Research, Chronic Fatigue Syndrome Project
Led by Leonard Jason, Ph.D., The CFS Project conducts research into psychological aspects of the disease, including patient coping, how the name affects public and/or medical perception, and demographic data, including incidence and racial and gender prevalence. This site provides book reviews, press releases, grant information, a slide show, and measures/scales used in research.
http://condor.depaul.edu/~ljason/cfs/

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GOVERNMENT LINKS & RESOURCES

CFS Fact Sheet
A good, basic fact sheet on CFS from National Institute of Allergy and Infectious Diseases (NIAID), of the National Institutes of Health (NIH). Answers common questions such as What is Chronic Fatigue Syndrome? Who Gets CFS? How Many People Have It? What Causes CFS? How is CFS Diagnosed? How Can I Cope With and Manage the Illness?
http://www.niaid.nih.gov/factsheets/cfs.htm

The Centers for Disease Control and Prevention (CDC)
Provides easy-to-read, basic information for patients and clinicians.
http://www.cdc.gov/cfs

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SSA DISABILITY BENEFITS AND CFIDS

Social Security Online
The Web site for the Social Security Administration. Provides information and forms on benefits, including disability (SSDI) and supplemental security income (SSI). Información en Español and other languages. Covers Medicare, Medicaid, employment support for people with disabilities, hearings and appeals, and changes to the program.
http://www.ssa.gov/

New York Support Network's Social Security Disability Document Links
This page contains links directly to the Social Security Administration's (SSA) web site to help when applying for Social Security Disability (SSD) and/or Supplemental Security Income (SSI). Includes "Disability Evaluation Under Social Security: (Also known as The Blue Book) Medical criteria for evaluating Social Security disability claims," "Policy Interpretation Ruling Titles II and XVI: Evaluating Cases Involving Chronic Fatigue Syndrome," "Providing Medical Evidence to the Social Security Administration for Individuals with Chronic Fatigue" and "Benefits For Children With Disabilities."
http://nysn.org/ssa_links.html

The Social Security and Disability Resource Center website: http://ssdrc.com/

SSRDC.com is written by a former disability examiner and addresses questions
that claimants often have about the application and appeal process but,
often as well, have trouble finding clear answers to.

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ACTIVISM/ADVOCACY

RESCIND
RESCIND (Repeal Existing Stereotypes about Chronic, Immunological and Neurological Diseases) is a CFIDS activism organization. This is a news and activism site with lots of links to awareness campaigns, recent media attention to CFIDS, and how to promote a CFIDS advocacy agenda to the government.
http://www.rescindinc.org/

Chronic Fatigue Syndrome: Changing the Name
Site that promotes the popular movement to change the name of CFS. Includes latest news and surveys on the topic, "What can be done to change the name," and background info on the issue. Includes "en francais: SFC -- le problème du nom."
http://www.cfs-news.org/name.htm

Action for CFIDS/M.E.
Promotes awareness, campaigns for change, and works to correct misperceptions in the media and by government officials. Also links to Action for CFIDS/M.E. discussion group.
http://www.cfs-news.org/action.htm

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YOUTH

CFS in Youth Home Page (of CFIDS Association of America)
Provides resources and support for children, adolescents, and college students with CFIDS or related conditions such as fibromyalgia, neurally mediated hypotension (NMH) and postural orthostatic tachycardia syndrome (POTS); as well as family members, teachers, school nurses, pediatricians, family practitioners, psychologists and others who assist children and teenagers with CFIDS.
http://www.cfids.org/youth.asp

For Parents of Sick and Worn-Out Children
Frank Albrecht's site: "When your child persistently suffers from pain, fatigue, heat and exercise intolerance, dizziness, nausea, 'cognitive fog,' and other symptoms of Chronic Fatigue and related syndromes, you as a parent have special kinds of problems. This page is devoted to pointing toward help on these problems." Provides information on family life and emotional development, detecting symptoms, common misdiagnoses, advocacy guidelines and related conditions such as Chiari I Malformation and cervical stenosis, orthostatic syncope, neurally mediated hypotension (NMH), postural tachycardia syndrome (POTS), and dysautonomia.
http://home.bluecrab.org/%7Ehealth/sickids.html

Association of Young People with M.E.
AYME is a UK-based charity dedicated to giving help, friendship, support and vital contact to children and young people with Myalgic Encephalopathy (M.E). AYME's activities, including this web site, are run by the young members themselves. Members receive a regular magazine, matched pen-pal and e-mail service, postal library, annual conference/get together, pen-pals for brothers and sisters, contact and advice for parents, and educational advice.
http://www.ayme.org.uk/

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MEDICAL

Surgery, Anesthesia and CFS/FM/MCS
Site compiled by Melissa Kaplan contains information on surgery and anesthesia for PWCs. Covers acupuncture, anesthesia, IV Bags latex and vinyl allergies/sensitivities, surgery, and topical anesthetics. Melissa's site also provides articles for PWCs on activism, books, chemical sensitivities, coping, diagnosis & differential diagnoses, disability, drugs, gender, hormones, pain, pets, and resources including, "Finding Help: Disability Attorneys, Doctors, and Support Groups."
http://www.anapsid.org/cnd/drugs/anesthesia.html

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INTERNATIONAL

National ME/FM Action Network (Canada)
A Canadian non-profit organization offering support, advocacy, education and research into the many, varied, anomalies connected with these illnesses. Works with the general public, educators, government agencies, and the ME/FM Community. Site includes a bulletin board, news releases, archives, a youth site for parents and teachers to access materials, Gulf War Syndrome information, alternative medicine information, membership, sales of books and videos, a doctors and lawyers roster to receive up to date medical and legal information, a guide on applying for disability pensions, and the bimonthly newsletter 'QUEST.'
http://www.mefmaction.net/

Nightingale Research Foundation (Canada)
A charitable foundation located in Ottawa, the Foundation conducts and assists research into the cause and cure of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and serves as an educational institution for the Canadian public, physicians, nurses, teachers and their professional societies. The Foundation provides support to persons with M.E./CFS and related conditions, represents people with M.E./CFS before all levels of government and the courts, promotes public and professional awareness of the disease; and promotes, supports and encourages research directed toward the treatment, prevention and cure of the disease.
http://www.nightingale.ca/

Other Canadian M.E. Sites:

Waterloo Wellington Myalgic Encephalomyelitis Association (WWMEA)
http://ca.geocities.com/wwmea/index.html

 

M.E. Association of Ontario
http://www.meao-cfs.on.ca/splash.shtml

 

The M.E. Association of Halton & Hamilton-Wentworth
http://www.hwcn.org/link/mehhw/

International Sites

Action for M.E. (United Kingdom)
Action for M.E. is a national charity that campaigns for more recognition, research and better care and benefits for people with M.E.; raises awareness of M.E. within the government, media, health care organizations and general public; and provides information, self-help and support services to people with M.E., their carers, family and friends. The AfME Web site includes links to local support groups, a newsletter and library, telephone help lines, a pregnancy network, AfME Young People, and nutritional supplements.
http://www.afme.org.uk/

ME/CFS Society (SA) Inc. (Australia)
The South Australia Web site provides links to support and information line; recovery/management model for tackling ME/CFS; services, goals, events, announcements, reports, and membership information of the Society, the 'Understanding and Managing ME/CFS/CFIDS' Project, youth policy, members' pages, articles, and Society members telling their own stories.
http://sacfs.asn.au/society/index.htm

CFS/CFIDS/ME Reference Guide (International)
Provides an International Directory of ME/CFS/FMS/MCS/GWS local support group pages, including Australia, Canada, Great Britain, the Netherlands, and Switzerland.
http://www.ncf.carleton.ca/ip/social.services/cfseir/CFSEIR.HP.html

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ON-LINE RESOURCES, INFO, and SUPPORT

About.Com Fibromyalgia and Chronic Fatigue Syndrome
Meet others with CFS/FM, friends, family, care givers, or anyone interested in learning more about CFS, Fibromyalgia, and related illnesses.Topics range from symptoms, treatments, and disability to coping strategies and support. Held every night 5:00pm Pacific (8:00pm Eastern) and continues all evening.
http://chronicfatigue.about.com/?once=true&

CFS-NEWS
VERY extensive CFS links site by Roger Burns. Latest News about CFS/M.E. and CFS-NEWS Electronic Newsletter; links to CFS radio shows and international medical conferences; medical fact sheets and documents; extensive links to CFS and related disorders discussion groups, e-mail lists and newsgroups; CFS-related Web pages; British, Canadian, Dutch, Australian, French (L'information en français sur le CFS), German (Informationen zum Chronisches Erschöpfungssyndrom), Swedish (Svenska), Denmark (Dansk), Argentina (Web site de Síndrome de Fatiga Crónica o Encefalomielitis Miálgica [SFC/EM] y Otra Web sites en español), Japanese, New Zealand, and Israeli (in Hebrew) CFS resources.
http://www.cfs-news.org/index.htm

CO-CURE Web Ring
The most extensive CFS Web ring, containing over 90 active sites. "The Co-Cure e-mail list was developed around the principle goal of furthering cooperative efforts towards finding the cure for the illness(es) commonly referred to as Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM). One of the primary ways in which this goal may be achieved is through effective exchange of information. To this end, we have created the Co-Cure Web ring. Covers all conceivable CFS and related issues, locally and internationally.
http://X.webring.com/hub?ring=cocureweb

Fibromyalgia & Chronic Fatigue Syndrome-M.E. WebRing
"This web ring is for people suffering from the debilitating ailments, Fibromyalgia & Chronic Fatigue Syndrome or Myalgic Encephalomyelitis(M.E.). Webmasters who have FMS or CFS (M.E.) sites are welcomed to join."
http://c.webring.com/hub?ring=fibro

FMS-CFS-Chronic Pain Support @www.ezboard.com
"Friends International Support Group and message board" for information and support for people with Fibromyalgia, FMS, Chronic Fatigue Syndrome, CFS, ME or chronic pain. Includes many chat groups, including "Smalltalk," "Coping and Health Problems," "Information Links," "Graphics/Photo/computer talk," "Annie's Pet Corner," "American Social Security/Disability," "Announcements and Friend's rules," plus archives and graphics/PC tutorials. 
http://pub104.ezboard.com/bsunshine35446

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BIBLIOGRAPHY

Journal of Chronic Fatigue Syndrome: Multidisciplinary Innovations in Research, Theory & Clinical Practice The Journal of Chronic Fatigue Syndrome offers multidisciplinary original research, practical clinical management, case reports, and literature reviews to keep the entire health care delivery team well informed. Utilizing the skills of authors from many fields, the editors and editorial board present articles and information that are both practical and thought provoking. The journal is intended for primary care physicians, psychologists, and specialists, as well as researchers from the many disciplines studying this complex illness. Journal of Chronic Fatigue Syndrome, a medical journal published quarterly (4 issues per volume). ISSN 10573321. For abstracts or more information on JCFS, go to
http://www.cfs-news.org/jcfs.htm. For subscription or other information, contact the publisher, Haworth Press,
http://www.haworthpressinc.com.


BOOKS

• Tara Allen, Shadow & Light: The Voice of CFIDS.

• David Bell, MD, The Doctor's Guide to Chronic Fatigue Syndrome: Understanding, Treating and Living with CFIDS.*

• Katrina Berne, Ph.D., Running on Empty.*

• Katrina Berne, et al, Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses*.

• William Collinge M.PH., Ph.D, Recovering from Chronic Fatigue Syndrome

• Norman Cousins, Anatomy of an Illness

• Camilla Cracchioli, RN, Dealing with Doctors When You Have Chronic Fatigue Syndrome.

• Kat Duff, The Alchemy of Illness*.

• MD Dwyer, The Body at War.

• Karyn Feiden, Hope & Help for Chronic Fatigue Syndrome

• Gregg Fisher, Stephen E. Straus MD, Paul R. Cheney MD, James Oleske MD, Chronic Fatigue Syndrome: A Victim's Guide to Understanding, Treating, & Coping With This Debilitating Illness.

• Fred Freidberg, Ph.D., Coping With CFS.

• Fred Friedberg, Ph.D., Leonard A. Jason, Ph.D., Understanding Chronic Fatigue Syndrome: An Empirical Guide to Assessment and Treatment.*

• Erica F. Verrillo, Lauren M. Gellman, Chronic Fatigue Syndrome: A Treatment Guide.

• Pamela D. Jacobs, 500 Tips for Coping with Chronic Illness.

• Toni Jeffreys, The Mile High Staircase.

• Hillary Johnson, Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.*

• Timothy Kenny, Paul R. Cheney, MD, Living With Chronic Fatigue Syndrome: A Personal Story of the Struggle for Recovery.*

• Kathleen Lewis, Successful Living with a Chronic Illness.

• Brian Lutterman, Long Night's Journey: Coping with Chronic Fatigue Syndrome.

• Terry Mosley, Life in the Slow Lane.

• Peggy Munson, Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome.*

• Zefra Pitzele, We Are Not Alone, Learning to Live with a Chronic Illness.

• Charles Pellegrino, Ph.D. & Jesse Stoff MD, Chronic Fatigue Syndrome, The Hidden Epidemic.

• Michael Rossenbaum, MD & Murray Susser, MD, Solving the Puzzle of Chronic Fatigue Syndrome.

• Jacki Schrimer, When I Am Weak.

• Mary Siegel, Ph.D. & Paul J. Donoghue, Ph.D., Sick & Tired of Feeling Sick & Tired: Living with Invisible Chronic Illness.

• Nancy Smith and Barbara Brooks, CFIDS: An Owners Manual.

• Jesse A. Stoff and Charles R. Pellegrino, Chronic Fatigue Syndrome: The Hidden Epidemic.

• Jacob Teitelbaum, MD, From Fatigued to Fantastic!: A Proven Program to Regain Vibrant Health, Based on a New Scientific Study Showing Effective Treatment for Chronic Fatigue and Fibromyalgia.

• Lynn Vanderzalm, Finding Strength in Weakness.

*Books with asterisks have been recommended by several people with CFIDS.

The books listed above are available at book stores and libraries. People looking for books on CFIDS might also be interested in:

CFS Discount Books
Leslie Barns' Web site features "books dealing with healthy living chronic fatigue syndrome, multiple chemical sensitivities, environmental illness, fibromyalgia, Gulf War syndrome, chemical poisoning, candidiasis, keeping a healthy home, alternative treatments, heart disease, cancer treatment, and Eastern medicine."
http://members.aol.com/ldbarns/

This page developed by Sharon Wachsler
email: SickHumor2@aol.com



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