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.

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.

 

A global day of protest for ME and CFS

 

Millions Missing Boston

“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.

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.