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Chronic Fatigue Syndrome

Maine Resources

Maine Support Groups:

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

National Resources

The CFIDS Association of America- https://www.omicsonline.org/societies/cfids-association-of-america/
A 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. 


Massachusetts CFIDS Association: http://www.masscfids.org
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. 


National CFIDS Foundation (NCF): http://www.ncf-net.org/
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. 


CFS Guide at About.com: http://chronicfatigue.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).


The CFIDS/M.E. Information Page: http://www.cfids-me.org/
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.


Listening to CFIDS: http://wwcoco.com/cfids/toc.html
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. 


About.Com Fibromyalgia and Chronic Fatigue Syndrome: 
http://chronicfatigue.about.com/?once=true&
 

Surgery, Anesthesia and CFS/FM/MCS: http://www.anapsid.org/cnd/drugs/anesthesia.html
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." 


International Association for CFS/ME: http://www.iacfsme.org/
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.

 

Dr. Charles Lapp: http://www.drlapp.net/
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. 


DePaul University Center for Community Research, Chronic Fatigue Syndrome Project
Led by Leonard Jason, Ph.D.: 
http://condor.depaul.edu/~ljason/cfs/
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.


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


SSA Disability Benefits (CFIDS)- http://www.ssa.gov/
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


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

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.


Chronic Fatigue Syndrome- Changing the Name: http://www.cfs-news.org/name.htm
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. 


National ME/FM Action Network (Canada): http://www.mefmaction.net/
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.'


Nightingale Research Foundation (Canada): http://www.nightingale.ca/
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.


Action for M.E. (United Kingdom)- http://www.afme.org.uk/
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.


ME/CFS Society Inc. (South Australia)- http://sacfs.asn.au/society/index.htm
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.


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


Books suggestions from people with CFIDS:

• 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"
 

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: http://members.aol.com/ldbarns/
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."

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