Rainbow at shoreline

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.

Video of "ME/CFS: A Surge of Interest and Knowledge"

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.

To CDC: Remove GET and CBT from website!

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.

Read more.

Read the community letter.

 

Fibromyalgia Research Study - 2016

This study is still recruiting patients as of October 2016.

This is a brain imaging study of pain responses. The study includes 5-14 assessment visits, lasting from 2-3 hours each. You may be eligible if you are 18-65 years old, are either generally healthy or have fibromyalgia, do not have a serious heart condition or certain other medical conditions, are not taking certain types of medications, and are not pregnant. There is no cost to you for any of the procedures and compensation up to $500.00 is provided.

For more details, see the study flyer.

The research takes place at the Brigham & Women’s Pain Management Center, 850 Boylston St, Chestnut Hill, and at the MGH Martinos Center
for Biomedical Imaging. For further information, please contact the study coordinator Olivia Franceschelli at 617-732-9718 or by email at ofranceschelli :at: partners.org.

Millions Missing Massachusetts


September 27, 2016

There were two Millions Missing events in Massachusetts on Sept. 27, one in Boston and one in Northampton.

In Boston, a small but intrepid group chatted with passers-by and handed out lots of ME/CFS Fact Sheets.

In Northampton, the mayor came out to greet the demonstrators and pledged to issue a City Proclamation for ME Awareness.



Photos from Boston.

 

 

 


Photos from Northampton. We expect the mayor of Northampton to issue a City Proclamation for ME Awareness soon.

 

 

 

 

 

Photos from Northampton.

Association responds to NIH's Request for Information

For years our ME/CFS patient community has felt ignored and abandoned by our federal government. While other diseases got attention and research funding, ME/CFS got pitifully little except a few dimes and lip service. All that seems to be changing. With the Request for Information (RFI) issued on May 24, 2016, the National Institutes of Health invited the ME/CFS patient community to participate in setting new directions in research into this disease. 

Our Association's Board of Directors signed on to two letters with suggestions to NIH, one with a comprehensive list of suggestions, and one specifically about clinical trials for Ampligen and rituximab. Both letters were prepared by members of the U.S. Action Working Group, in which our Association is a participant. Two earlier letters were also re-submitted to become part of the response to the RFI, one focused on research, and one with suggestions on getting input from the ME/CFS community. In addition, several members of our Board of Directors sent individual responses to the RFI. We hope that some of you did as well. Patients and advocates finally have a seat at the table. Now we can and must speak up.

 

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.