- Last Updated: 06 February 2019 06 February 2019
Supplementary Readings: Annotated List (Massachusetts ME/CFS & FM Association)
Links to more information about ME/CFS (Massachusetts ME/CFS & FM Association)
- Last Updated: 29 May 2019 29 May 2019
Not able to attend recent screenings of Unrest or other events in Massachusetts?
Videos from these events are now posted.
Video from Hampshire College (Amherst, February 2019)
Video from MGH Institute of Health Professions (Boston, January 2019)
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)
- 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.
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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.