ONLINE ORGANIZATIONS, RESOURCES, & SUPPORT
PHYSICIANS & RESEARCHERS
GOVERNMENT LINKS & RESOURCES
FOREIGN LANGUAGE AND INTERNATIONAL RESOURCES
Fibromyalgia is a widespread chronic pain condition of the musculoskeletal
system with a syndrome of other symptoms such as fatigue, cognitive impairment,
and sleep disturbance. It is sometimes abbreviated as “fibro,” “FM,” or “FMS”
(for fibromyalgia syndrome). The cause is still unknown. The term fibromyalgia
means pain in the fibrous tissues in the body: the muscles, ligament and
Very often fibromyalgia is linked with chronic fatigue syndrome (CFS) since
there is a great deal of overlap in symptoms and diagnoses.
The Chronic Syndrome Support Association
This site includes information on FMS, multiple chemical sensitivity (MCS),
CFS, myofascial pain syndrome (MPS), and other related conditions. Lists issue
titles and authors of quality quarterly newsletter. Also features pamphlets,
news and events, patient resources, “Bedroom Talk,” books and videos, letters,
articles of Interest, and links.
The Fibromyalgia Network
Provides educational materials on fibromyalgia syndrome (FMS) and chronic
fatigue syndrome (CFS). Offers quarterly newsletter. Provides specialty packets,
coping tips, advocacy information, and archived information on a range of
topics, including international awareness day, back supports, disability,
information for family and friends, how to handle doctor’s visits and other people in
your life, jaw pain, headaches, and a great deal of information on
treatments, drug and non-drug.
Massachusetts CFIDS & FM Association
The Mass. CFIDS (chronic fatigue immune dysfunction syndrome) & FM
Association is dedicated to supporting research, promoting medical and public education,
and advocacy and support services for persons with CFIDS or FMS. Serves
Mass., Vermont, New Hampshire, and Maine. 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.
The National Fibromyalgia Partnership (NFP)
NFP’s mission is to "provide medically accurate, up-to-date information on
the symptoms, diagnosis, treatment, and new research on fibromyalgia." Site
provides information on fibromyalgia in English, Spanish, and French, as well as
articles, research information, books and videos, a help guide, and an online
store. Articles include medical and therapeutic topics, a resource guide for
health professionals, and advice on how to win disability cases.
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.
Well Spouse Foundation
The Well Spouse Foundation (WSF) has support groups for healthy husbands,
wives, and partners of people with a chronic illness and/or disability.
ONLINE ORGANIZATIONS, RESOURCES, & SUPPORT
AOL Fibromyalgia Chats, Message Boards, and Home Pages
America Online has scheduled fibromyalgia support chats six days a week. To
view the days, times, and locations, or to contact the hosts, go to "People
Connection," "Find a Chat," and click on "Chat Schedule." Choose "Health Chat
Schedule" and then scroll down to "Fibromyalgia Support."
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.
CFIDS Association of America
Our mission is to conquer CFIDS. Learn about the programs and people dedicated to this important effort.
Resources, research and free continuing education opportunities. View the Provider Education Project jointly sponsored by the CDC and the CFIDS Association.
CF Pen Pal Alliance
Provides online support group Web site on CFS/FMS as well as a free,
international pen pal program for CFS/FMS/ME sufferers of all ages as well as their
families and care givers -- available by e-mail or postal mail. Boasts over 1000
CFS Guide at About.com
Extensive reader-friendly information on CFIDS, 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). Chat held nightly.
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 FMS,
including información básica en español, a list of doctors, research updates,
activism links, a "reading room" of reading materials on FM and auto-immune
conditions, containing links to online documents, book reviews, editorials, and
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.” Also addresses Gulf
War Syndrome and MCS. Covers all conceivable CFS and related issues, locally and
The Fibrom-L Community
Links, basic information, and resources such as how to access free/low cost
medication or find a doctor. Also includes a moderated fibromyalgia discussion
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."
Fibromyalgia Personal Support Center
Up-to-date news, archives, excellent links, support groups, chat rooms, an
events page, a bulletin board of helpful items for sale or barter, contests,
links to personal homepages, even "fibro-friendly" recipes. Site is maintained by
people with fibro.
FMS-CFS-Chronic Pain Support @www.ezboard.com
"Friends International Support Group and message board" for information and
support for people with Fibromyalgia, Chronic Fatigue Syndrome, ME or chronic
pain. Includes many chat groups, including "Small talk," "Coping and Health
Problems," "Information Links," "Graphics/Photo/computer talk," Annie's Pet
Corner," "American Social Security/Disability," plus archives and graphics/PC
Our FM/CFS World Inc.
Our FM/CFS World Inc. is a nonprofit organization maintained by sufferers of Fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome. Our Mission is to improve the quality of life for fellow sufferers, while increasing public, governmental and medical awareness of these diseases.
Chronic Fatigue Syndrome and Fibromyalgia Information Exchange Forum
The name "Co-Cure"" stands for "Cooperate and Communicate for a Cure." Our Focus: CFS & Fibromyalgia
Carol Johnson and Iowa FMS Support Group
A personal homepage and headquarters of a support group in Iowa. Includes a
good list of support groups in each state as well as tips on how to start a
support group. Bonus is a pain scale that is useful for communicating to doctors
the specifics of pain. Also includes original writings by people with
fibromyalgia, causes, diagnosis, treatment, further research, exercises, and links.
Fibromyalgia and CFS site with excellent set of medical articles, links,
products and treatments for sale, and CFS DAYS cartoons for "the healing tonic of
a good laugh."
"The Mission of Fibrohugs is to offer a place where persons with Fibromyalgia
can find understanding, knowledge, and support in their daily battle with
this painful disease." Offers a full range of support groups (including for teens
and loved ones). Along with stories and poems, this site offers medical
information on FMS and related/similar conditions such as myofascial pain, lupus,
multiple sclerosis, temporomandibular joint disorder, migraine headaches,
Raynaud's numbness and tingling, restless leg syndrome, allergies and/or
Joy’s World’s Resource Site for Fibromyalgia Survivors
Self-described as "resources, support and links to other fibro sites. The
purpose of this site is to bring information to FMS people. I promote a positive
attitude and humor in dealing with FMS." Includes "Cheap Tricks -- Top 5
Things To Do for newly diagnosed FMSers," "The Fibromyalgia Bookshelf," "The Men's
Zone," and a guestbook where you can reply to the entries.
Navigating the Body: A Visibility Project
This site is an art installation of work by three women with fibromyalgia.
Web designer Susan Harman says, "My objective for Navigating the Body is to try
to give voice to the unspoken and express the invisible through art." Powerful
Rowan's Resources: Fibromyalgia and Vulvodynia Resources
This page contains resources on two interrelated disorders, fibromyalgia
syndrome (FMS) and vulvodynia, a chronic vulvar pain syndrome. Alternative
Fibromyalgia and Chronic Myofascial Pain Syndrome
Site of Devin Starlanyl, M.D., selling her books and tapes on fibromyalgia
and chronic myofascial pain syndrome. Also includes information on what other
health-care providers, such as dentists, should know about patients with FMS.
Many other fibromyalgia sites link to this one. Information in Spanish and
Dutch. Site includes a "diagnostic," referenced data sheets to give to your
doctor(s), a physicians' bibliography, preliminary findings of her study, and a list
of current and ongoing studies in need of patient participation.
National Fibromyalgia Research Association
P. O. Box 500
Salem, OR 97302
Fibromyalgia and Chronic Pain Research Program
The Web site for the joint Kettering University/McLaren Regional Medical
Center Fibromyalgia (FMS) research program, led by Dr. Jeff Hargrove, Dr. Susan
Smith and Dr. Sunil Nagpal. Provides updates on research, ordering info for
"Videotape of the Kettering University FMS/Chronic Pain Forum," encourages
information sharing, provides info on FMS support groups; finding a physician in your
area; suggested reading & selected research papers and articles; and the
article, "I need to help my physician understand more about my condition."
From Fatigued to Fantastic
Site of Dr. Jacob Teitelbaum, a physician who specializes in holistic
medicine for people with fibromyalgia and chronic fatigue syndrome and author of the
book by the same name. Much is promoting books and articles for sale, but also
contains articles and references to medical journals and abstracts.
CFS Research Foundation
CFS Research Foundation is a nonprofit website providing Free medical articles on Chronic Fatigue Syndrome.
For-profit site selling Pro Health products. Includes information on
treatment protocols by many FMS/CFIDS doctors, as well as many medical/scientific
articles, a chat room with professional guests (and a transcript archive), and
other supportive material. Sections include Fibromyalgia & Chronic Fatigue
Syndrome News and Information; Fibromyalgia & Chronic Fatigue Syndrome Research
Abstracts; Fibromyalgia: Overview, Treatment & Online Chat; CFS & FM Support:
Disability, Doctor Referral, Message Boards, Support Groups, Drug News, & Related
The Oregon Fibromyalgia Foundation (OFF)
This site contains a collection of scientific literature on fibromyalgia,
including much by Robert Bennett, an Oregon Health Sciences University doctor and
prominent FMS researcher. Also has a section on Social Security
Administration regulations regarding FMS and CFS.
GOVERNMENT LINKS & RESOURCES
U.S. Department of Health and Human Services site is informs about the
priorities and goals of fibromyalgia research. Contains articles such as
“Fibromyalgia Research: Challenges and Opportunities” and “Questions and Answers About
Fibromyalgia.”The home site, www.healthfinder.gov, has general health
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
NIAMS is a branch of the National Institutes of Health (NIH). This site
provides links to numerous studies and government articles on FMS, many of which
are simply conference or meeting reports, but some of which include studies on
medications, sleep, neuroscience, and endocrinology.
Social Security Online
The Web site for the Social Security Administration provides information and
forms on benefits, including social security disability income (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.
Helping Fibromyalgia Patients Obtain Social Security Benefits
Excellent article by, Joshua W. Potter, Esq., an attorney familiar with FMS.
Article covers topics of "What Is Disability?" "The Process Begins,"
"Appeals," "Requesting a Hearing," "The Role of the Physician," "Medical Records,"
"Past Work," "Narrative Report," "In-Person Testimony," and "Disability
Economics." Includes a very useful table of the steps in the process of applying for
SSI/SSDI, with time line and comments.
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
Teen & Young Adult Guide to FMS: Fibromyalgia Links
Extensive fibromyalgia links. Includes links for research projects;
information and search engines to gather specific information on the syndrome; FMS
related articles; support pages for chats, pen pals, and message boards; youth
Surgery, Anesthesia and CFS/FM/MCS
Site compiled by Melissa Kaplan contains information on surgery and
anesthesia for people with FMS, CFS, etc. 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."
Examines treatments, therapies, and medications for
numerous health conditions, including FMS. An extensive list of treatments is
found under each condition. Site visitors are also encouraged to rate the
effectiveness of treatments (using a number scale) that they’ve tried or prescribed.
Top ten remedies for FMS include list-making, hydrotherapy, rest, guaifenesin,
OxyContin, therapeutic massage, Flexeril, and Neurontin. Also has FMS links.
FOREIGN LANGUAGE AND INTERNATIONAL RESOURCES
Association de fibromyalgie de l'Estrie (Quebec/Canada)
In French and English, this Web site offers articles, advice, links, and
support-group contact information from a Quebec fibromyalgia association.
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.'
Fibromyalgia Information and Local Support (Canada)
Info, articles, links, mailing list, a support group and a list of speakers.
Basic information also in French (en Francais). Useful chart of FMS tender
points and a very comprehensible explanation of diagnostic criteria for FMS.
Also see these sites listed elsewhere for information on fibromyalgia in
languages other than English:
In Spanish (en Español):
In French (en Francais):
• Gayle Backstrom, Bernard R. Rubin, When Muscle Pain Won't Go Away: The
Relief Handbook for Fibromyalgia and Chronic Muscle Pain.
• Stacie L. Bigelow, Fibromyalgia: Simple Relief through Movement.
• David S. Bell, MD, et al, A Parent's Guide to CFIDS: How to Be an Advocate for Your Child With Chronic Fatigue Immune Dysfunction.
• Katrina Berne, et al, Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses
• Chet Cunningham, The Fibromyalgia Relief Handbook.
• Kat Duff, The Alchemy of Illness
• Jenny Fransen, RN and I. John Russell, MD, PhD, The Fibromyalgia Help Book: Practical Guide to Living Better with Fibromyalgia.
• Milton Hammerly, MD, Fibromyalgia: The New Integrative Approach: How to Combine the Best of Traditional and Alternative Therapies (Integrative Health Series).
• Pamela D. Jacobs, 500 Tips for Coping with Chronic Illness.
• Toni Jeffreys, The Mile High Staircase.
• Kathleen Lewis, Successful Living with a Chronic Illness.
• Terry Mosley, Life in the Slow Lane.
• Mark Pellegrino, MD, Inside Fibromyalgia.
• Gregg Piburn, Beyond Chaos: One Man's Journey Alongside His Chronically Ill Wife.
• Zefra Pitzele, We Are Not Alone, Learning to Live with a Chronic Illness
• Jacki Schrimer, When I Am Weak.
• Mary J. Shomon, Living Well with Autoimmune Disease: What Your Doctor Doesn't Tell You...That You Need to Know.
• Mary Siegel, Ph.D. & Paul J. Donoghue, PhD, Sick & Tired of Feeling Sick & Tired: Living with Invisible Chronic Illness..
• Devin J. Starlanyl, MD, Mary Ellen Copeland, Fibromyalgia and Chronic Myofascial Pain: A Survival Manual 2nd Edition.
• Devin J. Starlanyl, MD, The Fibromyalgia Advocate: Getting the Support You Need to Cope with Fibromyalgia and Myofascial Pain Syndrome.
• 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..
• Susan Milstrey Wells, A Delicate Balance: Living Successfully with Chronic Illness.
• Miryam Williamson, Fibromyalgia: A Comprehensive Approach.