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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

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

Petition to the Agency for Healthcare Research and Quality (AHRQ)

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Last Updated: 29 August 2016 29 August 2016

On February 3, 2016, a group of patient organizations and advocates sent a followup letter to the Agency for Healthcare Research and Quality (AHRQ) further detailing concerns with the 2015 AHRQ Evidence Review and reiterating their request, originally made in November 2015, to reanalyze the conclusions of AHRQ’s Evidence Review in light of the long-known concerns with the PACE trial published in The Lancet and with the Oxford case definition for CFS. You can show your support by signing this petition.

Read more: Petition to the Agency for Healthcare Research and Quality (AHRQ)


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  5. Does Advocacy Work, P2P Edition - Good News and Bad News

Subcategories

Health Care Reform 2

Advocacy 38

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.