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.
- Last Updated: 25 October 2018 25 October 2018
How Investigative Journalism Succeeds in a Hostile Medical Environment: A Conversation with David Tuller
DrPH and investigative journalist
David Tuller has been writing since 2015 about the controversial PACE study, which purported to "prove" that Graded Exercise Therapy and Cognitive Behavioral Therapy could cure ME/CFS. Top researchers who have reviewed the study say it is fraught with indefensible methodological problems. Building on the work of ME/CFS advocates and researchers, Tuller exposed these flaws in a series of carefully researched articles. In addition to his work on PACE, he has written articles about ME/CFS for the New York Times and other publications.
Learn first-hand how journalism can advance science and public awareness of a devastating disease.
Send your questions for David Tuller to events (at) massmecfs (dot) org and we will ask as many as we can during this conversation.
Open to the public.
Saturday, Nov. 3, 2018, 1 - 3:30 p.m.
Newton Wellesley Hospital, Newton MA
Researchers and Clinicians: We regret that the Researcher/Clinician Forum has been cancelled. We hope to reschedule this for a later date.
- Last Updated: 28 October 2018 28 October 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. More Information.
- 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.
- Last Updated: 05 July 2018 05 July 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 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)
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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.