The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & 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: 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.
- Last Updated: 08 December 2016 08 December 2016
The video of "ME/CFS: A Surge of Interest and Knowledge", the lecture by Dr. Anthony Komaroff, Harvard Medical School Professor, Clinician and Researcher, presented to Massachusetts CFIDS/ME & FM Association on Nov. 5, 2016, is now posted.
The lecture is 63 minutes.
The Q&A is 34 minutes.
- Last Updated: 02 December 2016 02 December 2016
Eleven patient organizations, including Massachusetts CFIDS/ME & FM Association, and 52 individual advocates have called for CDC to remove recommendations for GET (Graded Exercise Therapy) and CBT (Cognitive Behavioral Therapy) from the CDC's ME/CFS website.
- Last Updated: 09 September 2016 09 September 2016
A letter to NIH Director Dr. Francis Collins supporting ME/CFS research and calling for a report to Congress, sponsored by Representatives Zoe Lofgren and Anna G. Eshoo of California, got 55 House member signatures and was sent to Dr. Collins today. This effort was led by a collaboration between #MEAction, Solve CFS/ME Initiative, and a number of other advocates and patient groups including Massachusetts CFIDS/ME & FM Association. This was a bi-partisan effort, and received support from over 10% of members of Congress, certainly a very strong showing! Congratulations to all on this successful outcome.
New England Representatives who signed the letter are:
Massachusetts: Joseph Kennedy III, Katherine Clark, James McGovern
New Hampshire: Frank Guinta
Maine: Chellie Pingree
Connecticut: Elizabeth Esty
Vermont: Peter Welsh
If you live in one of these districts, please send your Representative a thank you note!
- Last Updated: 26 May 2016 26 May 2016
“Millions Missing” global day of protest — Boston!
#MillionsMissing is dedicated to the millions of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. At the same time, millions of dollars are missing from research and clinical education funding that ME should be receiving. And millions of doctors are missing out on proper training to diagnose and help patients manage this illness.
On May 25th, 2016 #MEAction organized a global day of action for equality for ME. ME patients, advocates, caregivers, and allies joined together to protest the lack of government funding for research, clinical trials and medical/public education, which has left ME patients without relief for years and even decades.
In Boston, we gathered at the JFK Federal Building. We had signs and information to hand out, as well as a petition to collect signatures supporting more funding for ME/CFS. We also talked to people who stopped by and made new friends.
We met separately with senior officials from the Boston branch of Health & Human Services to deliver our message and ask for their support. They were very well informed, understood our issues, and asked great questions. We see this as the beginning of an on-going relationship.
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Notice about names
The Massachusetts CFIDS/ME & 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) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.
Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.