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: 30 August 2017 30 August 2017
Board member Leah Williams advocated for more funding for ME/CFS research during several meetings with Massachusetts members of congress in Washington DC in mid-March 2017. These meetings were some of the 30 meetings held by a group of advocates, coordinated by the Solve ME/CFS Initiative and the Congressional group of the U.S. Action Working Group.
Left to right: Leah Williams, patient advocate and board member of Massachusetts CFIDS/ME & FM Association; Carol Head, President of SMCI; Senator Ed Markey (MA), Emily Taylor, SMCI Director of Advocacy and Public Relations; Mike Atherton, member of SMCI board of directors, and Gail Cooper, #MEAction Congressional Chair
Left to right: Carol Head, President of SMCI; Emily Taylor, SMCI Director of Advocacy and Public Relations; Senator Elizabeth Warren (MA) and Leah Williams, patient advocate and board member of Massachusetts CFIDS/ME & FM Association.
For a more complete report on the week's activities, see "Solve ME/CFS Initiative storms DC to tackle the Federal Budget."
- Last Updated: 06 December 2018 06 December 2018
Disability and Social Security with ME/CFS, Interview with Robert Robitaille | ME/CFS Alert Episode 100
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.
NEW! 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.
Libby's experience with ME | ME/CFS Alert Episode 90, published on June 1, 2017
The work of the Massachusetts CFIDS/ME & FM Association | Episode 86, published on March 29, 2017
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...
- Last Updated: 28 February 2017 28 February 2017
"I will be your advocate for more research" Massachusetts senator Ed Markey promised an ME patient at a Town Hall meeting on Feb. 23rd.
Read the story, view the video clip, and then call Senator Markey's office (202-224-2742) to thank him for promising in Northampton to advocate for M.E. on Capitol Hill. If you are an ME patient let them know. If you are a Massachusetts resident be sure to say that. Our Association will be following up with Senator Markey to let him know how he can help!
- Last Updated: 15 February 2017 15 February 2017
"What happens when you have a disease doctors can't diagnose," film-maker and ME/CFS advocate Jen Brea's TED talk, was filmed in June 2016 and has recently been made available for viewing (subtitles in 10 languages!). This is 17 minutes of gripping power. Watch it now!
- Last Updated: 28 February 2017 28 February 2017
Chronic Fatigue Syndrome Advisory Committee meeting
Washington D.C., January 12-13, 2017
by Charmian Proskauer
Several of our members attended the meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) or gave public comment (Libby Potter, Leah Williams, Robie Robitaille, and myself). It was frustrating for those who tried to watch or listen from home, as the technology was much inferior to that used for previous meetings, due to the location of the meeting. We didn’t know about that in advance, and there should have been better instructions for those attending remotely. For those able to attend in person, it was another reminder of the importance of face to face interaction and being able to get to know one another at least a bit. Informal conversations can lead to better understanding and make it much easier to work together going forward.
Near the beginning of the meeting Carol Head presented an impassioned plea for the CFSAC to recognize the urgency of the ME/CFS public health crisis and to take immediate steps to become a more effective body. Several committee members made suggestions, as did the advocates in attendance, some of these suggestions relating to how members of the public attending in person could participate in the meeting. This set the tone for the rest of the meeting.
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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.