- 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: 16 January 2022 16 January 2022
NEW! Interview with Rivka Solomon | ME/CFS Alert Episode 130, January 2, 2022
Rivka Solomon discusses exciting ME/CFS advocacy successes, how advocacy can impact the health of ME/CFS advocates, shortcomings of the NIH, and more.
The work of the Massachusetts ME/CFS & FM Association | ME/CFS Alert Episode 114, June 1, 2020
Charmian Proskauer talks about our association's efforts to help people with ME/CFS & FM during the COVID-19 pandemic.
This interview was originally broadcast on White House Chronicle, Llewellyn King's syndicated public affairs program, on PBS on April 23, 2020
Disability and Social Security with ME/CFS, Interview with Robert Robitaille | ME/CFS Alert Episode 100, September 13, 2018
Robert Robitaille discusses his personal experience fighting for disability benefits for his daughter, Robie who has ME.
Living with ME/CFS: Robie's Story | ME/CFS Alert Episode 99, August 26, 2018
Robie talks about her daily life with ME.
Llewellyn King talks with members of our Association in his ME/CFS Alert video series, recorded on March 24, 2017.
Libby's experience with ME | ME/CFS Alert Episode 90, published on June 1, 2017
In this conversation, Libby tells of her long journey from being bedridden with ME to being able to function, albeit at a reduced level from when she got ill. She says that a series of holistic therapies, including a special diet, have been working for her.
ME/CFS Diagnosis, children with ME, and the medical community with Alan Gurwitt, M.D. (Episode 87), published on April 12, 2017
Children with ME, Being an Advocate and Advice for Parents | ME/CFS Alert Episode 88, published on April 23, 2017
More to come...
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.