The Massachusetts ME/CFS & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.
Special Invitation!
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- Last Updated: 17 December 2018 17 December 2018
On January 15th, come learn about the “millions missing,” those living with the debilitating disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which disables 1-2.5 million Americans.
The Massachusetts General Hospital
Institute of Health Professions
invites the public, healthcare providers and researchers to the
2019 Ann W. Caldwell President’s Lecture: Interprofessional Rounds.
Program moderator:
Ronald G Tompkins, MD, ScD, Director, MGH Center for Surgery, Innovation & Bioengineering.
Panelists include patient advocates from the Massachusetts ME/CFS & FM Association.
Tues., Jan. 15th, 2019, 5:30–7:00 p.m. (doors open 5 pm)
Northeastern University
Blackman Auditorium, 342 Huntington Ave (Ell Hall), Boston.
This year’s topic is
“Invisible Disability: Providing Compassionate Care for a Person with ME/CFS”
Join us for an excerpt of the Sundance award-winning film UNREST, chronicling the hidden lives of patients, followed by a discussion with an MGH researcher, a healthcare provider and patient advocates from the Massachusetts ME/CFS & FM Association. This program will inspire you to bring a new awareness about ME/CFS back to your clinical practice.
To learn more about this event: https://www.mghihp.edu/ann-w-caldwell-presidents-lecture-interprofessional-rounds
New videos are posted!
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- Last Updated: 03 December 2018 03 December 2018
Not able to attend recent screenings of Unrest in Massachusetts?
Videos (opening remarks and panel discussion) from these events are now posted.
Video from Boston University (Boston, October 2018)
Video from Cooley Dickinson Hospital (Northampton, May 2018)
Video from Massachusetts State House (Boston, April 2018)
Video from Massachusetts Department of Public Health (Boston, March 2018)
Video from Regent Theatre (Arlington MA, Nov. 2017)
ME/CFS educational events - Fall 2018
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- Last Updated: 03 December 2018 03 December 2018
Get details of all ME/CFS educational events Fall 2018 in Massachusetts.
- September 12 – Massachusetts General Hospital, Boston, MA. Sponsored by the Russell Museum.
- October 10 – Tsai Performance Center, Boston University, Boston, MA. Sponsored by Sargent College Alumni Association. Video.
- October 16 – Geisel School of Medicine at Dartmouth, Hanover, NH.
- October 30 – Northeastern University School Health Academy, N.U. School of Nursing, Burlington, MA. Contact hours credit for nurses and Professional Development Points for school professionals. More information.
- November 3 – "How Investigative Journalism Succeeds in a Hostile Medical Environment: A Conversation with David Tuller," Mass ME/CFS Annual Meeting and Conference, Newton Wellesley Hospital, Newton, MA.
“My Medical Insurance Story” Survey – summary of results
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- Last Updated: 08 June 2018 08 June 2018
We conducted a short 5-question survey during the month of April, 2018, and publicized it within the U.S. ME/CFS community. We asked respondents to briefly describe their experience with their (U.S.) commercial health insurance provider, identify the insurance provider, and rate their overall experience on a scale of 1 to 5 from very positive to very negative. We also asked if they had received a diagnosis of ME, CFS, or ME/CFS. We received 187 responses. Results were tallied by hand. 95% of respondents had a diagnosis of ME/CFS, or ME/CFS. 22% reported very positive or positive experiences, 16% neutral, and 62% negative or very negative.
Read more: “My Medical Insurance Story” Survey – summary of results
Unrest Events - Spring 2018
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- Last Updated: 23 April 2018 23 April 2018
Get details of all Unrest events Spring 2018 in Massachusetts.
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.