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.

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.

CDC Funding Update: The Importance of Lobbying

A month ago, patient advocate Jennifer Spotila discovered that the U.S. Senate was proposing to zero-out the ME/CFS budget at the Centers for Disease Control and Prevention. Read what has happened since.

Invitation from the CDC

Our Association has been invited to nominate a representative to the Technical Development Workgroup, sponsored by the Centers for Disease Control and Prevention, ME/CFS program. Our nominee, a patient and Board member, not only has a background in public health but will also bring the patient's voice to this project. This project will begin shortly and is expected to terminate sometime in 2017.

Read more: Invitation from the CDC

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.