The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & 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.
- 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
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).
- Last Updated: 07 February 2016 07 February 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and Quality (AHRQ) further detailing concerns with the 2015 AHRQ Evidence Review and reiterating their request, originally made in November 2015, to reanalyze the conclusions of AHRQ’s Evidence Review in light of the long-known concerns with the PACE trial published in The Lancet and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.
- Last Updated: 07 January 2016 07 January 2016
More than ever before, 2015 has been a year that has brought fresh hope to Myalgic Encephalomyelitis (ME) patients. The Institute of Medicine (IOM) and NIH Pathways to Prevention (P2P) reports confirmed the neglect and disbelief that have held the disease hostage for decades and strongly recommended action to improve patient care. Publications from Stanford, Columbia and Haukeland (Norway) Universities brought new insights into the biology. World-renowned scientists have joined the fight. Stories about severely ill patients like Ron Davis's son have created more public awareness. And the Tuller series brought greater exposure to the concerns with the PACE trial and psychogenic theories.
For the first time, there is a sense that we have huge opportunities to change the future for ME patients. And just as importantly, there is a sense that if we want to turn those opportunities into reality, then we need to find new ways to work together across the community to increase the impact of our voices.
- Last Updated: 07 January 2016 07 January 2016
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.
- Last Updated: 03 April 2016 03 April 2016
Up to 60% of Fibromyalgia patients in some studies show evidence of Small Fiber Polyneuropathy (SFPN), a condition which shares many symptoms with Fibromyalgia and which may be treatable. Dr. Khosro Farhad spoke about this topic and reviewed recent research on SFPN at a public talk sponsored by the Massachusetts CFIDS/ME & FM Association on Nov. 14, 2015 at Newton-Wellesley Hospital, Newton, Massachusetts.
- Video of the talk is posted here and video of the Q&A is posted here.
- Dr. Farhad's slides are posted here.
- The chart for diagnosing Fibromyalgia according to the 2011 criteria from the American College of Rheumatology is posted here.
- A list of blood and other test to consider for diagnosing Small Fiber Polyneuropathy is posted here.
Disclaimer: There materials are provided only for convenience so that you can print them out and take them to discuss with your health care provider.
Please note this correction from Dr. Farhad: "When I spoke about the diagnosis of fibromyalgia based on American College of Rheumatology criteria, there was a mistake in my explanation. The patients need to answer “yes” to the first question and “no” to the second question in the third box [questions 4 and 5, see slide 3]. I mentioned patients should answer yes to both questions, which is not correct."
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Notice about names
The Massachusetts CFIDS/ME & 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) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.
Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.