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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.

Resource Library

Congressional letter to NIH has 55 House member co-signers

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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.

Read the full press release

See the letter with all signatures

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!

USAWG submits testimony to Congress

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Last Updated: 16 April 2016 16 April 2016

April 15, 2016. Massachusetts CFIDS/ME & FM Association has endorsed Outside Witness Testimony to Congress, prepared by the U.S. Action Working Group (USAWG) and filed today with the House and Senate Appropriations Committees.

The Testimony provides members of the Committees with information about ME/CFS and makes the following funding requests:

  • CDC: Restore funding for ME/CFS in FY17 budget - $6 MM
  • HHS/Assistant Secretary for Health – Office of Women’s Health: Continue funding for Chronic Fatigue Syndrome Advisory Committee - $300,000
  • NIH: Follow through on recent statements to patients by providing significant and specific funding for ME/CFS research, including RFAs

 Read the complete Testimony here (House) and here (Senate).  

The U.S. Action Working Group is a coordinating committee for a number of non-profit organizations and patient/advocates working to advance research on the disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). 

Documents for visits to congress March 2016

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Last Updated: 17 March 2016 17 March 2016

MassCFIDS ME/CFS Fact Sheet

MassCFIDS one-pager for Congress

Suggested language for Appropriations bill

Sample letter to Appropriations Committee

More Articles ...

  1. Petition to the Agency for Healthcare Research and Quality (AHRQ)
  2. Depression and a Success Story
  3. Developmental Issues in Adolescents with CFIDS - A Parent's Thoughts
  4. A Son's Road to Recovery
  5. Important Advocacy Announcement

Subcategories

Health Care Reform 2

Advocacy 39

Congress2016 1

Documents used in Congress visits March 2016

Research 5

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.