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.
- Last Updated: 26 May 2016 26 May 2016
“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.
- Last Updated: 06 January 2016 06 January 2016
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.
- 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."
- Last Updated: 06 January 2016 06 January 2016
Jo M. Solet, MS, EdM, PhD, OTR/L was the keynote speaker at the Massachusetts CFIDS/ME & FM Association's Spring Lecture held on April 6, 2013. Dr. Solet's talk was on "The Science of Sleep." The event was co-sponsored by the Massachusetts Department of Public Health and held at the Hinton State Laboratory Institute Auditorium in Jamaica Plain, MA.
A video of the lecture is now available at YouTube.
YouTube links (YouTube versions can be only be accessed from this site or from the direct links; the videos are not searchable on YouTube):
Read a written summary of her talk, The Science of Sleep. Also available are Dr. Solet's list of Tips for Sleep and Fatigue Management in CFIDS/ME & FM.
Dr. Solet is a Clinical Instructor at Harvard Medical School, a member of the Harvard Medical School Division of Sleep Medicine, and the Department of Medicine at Cambridge Health Alliance. She is the co-author of sleep disruption studies and is clinically trained in occupational therapy and behavioral medicine. Dr. Solet brought a unique perspective on sleep and how it impacts our health.
Dr. Solet introduced us to the science of sleep and help us understand how sleep is structured and how it changes throughout our life cycle. She explained adverse effects of poor sleep, sleep debt and describe some ways sleep may be enhanced. She highlighted research findings on sleep abnormalities uncovered in CFIDS/ME and FM. Dr. Solet's lecture helped to uncover the many internal physiological changes and activities that happen during sleep and how it becomes disrupted.
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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.