Massachusetts ME/CFS & FM Association
The Massachusetts ME/CFS & FM Association is a 501c3 non-profit organization founded in 1985. They support patients with ME/CFS and Fibromyalgia and their families and advocate for more effective treatment and research, as well as, work to educate health-care providers and the general public regarding these often severely-disabling physical illnesses. It is one of the oldest voluntary associations in the United States for patients with Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS or CFIDS) and Fibromyalgia (FM). Bonnie Gorman, RN founded the group.
Resources available throught their website are: Downloadable copy of IACFS/ME Primer - 2014 Edition The Massachusetts CFIDS/ME & FM Disability Handbook; a Newsletter; a designated phone line for patient's questions; a Support Group Leaders Operational Manual; and links to educational videos and websites.
The association frequently works with the Chronic Fatigue Syndrome Advisory Committee, the committee that advises Health and Human Services regarding ME/CFS, often having a member of the Massachusetts ME/CFS & FM Association as a committee member or by providing testimony.
Name change[edit | edit source]
"Legally named Massachusetts C. F. I. D. S. Association, the organization has updated its “doing business as” name periodically, adding Fibromyalgia (“& FM”) in the early 1990s, changing “CFIDS” to “CFIDS/ME” in 2008, and “CFIDS/ME” to “ME/CFS” in 2018."
Contact info[edit | edit source]
- P.O. Box 690305
- Quincy, MA 02269
- Info Line: 617-471-5559
Talks and interviews[edit | edit source]
- Mar 29, 2017, Episode 86 - The work of the Massachusetts CFIDS/ME & FM Association by ME/CFS Alert with Charmian Proskauer
Online presence[edit | edit source]
See also[edit | edit source]
References[edit | edit source]
myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.
Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) - Chronic Fatigue and Immune Dysfunction Syndrome is another term for Chronic Fatigue Syndrome, but one which emphasizes the immunological aspects of the disease. Popular in the 1990's, this term has apparently fallen into disuse.