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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) and 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 often severely-disabling physical illnesses. We provide supportive services for patients and their families and advocate for more effective treatment and research.

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Fibromyalgia and Small Fiber Polyneuropathy PDF Print E-mail

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.

  • Dr. Khosro'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. 

Dr. Farhad has provided copies of the research articles that he mentioned in his talk.

Caro XJ et al, “Evidence of Abnormal Epidermal Nerve Fiber Density in Fibromyalgia, Clinical and Immunologic Implications,” Arthritis & Rheumatology: 66, No. 7 (July 2014): 1945–1954.

Kosmidis ML…Dalakas MC et al, “Reduction of Intraepidermal Nerve Fiber Density (IENFD) in the skin biopsies of patients with fibromyalgia: A controlled study,” Journal of the Neurological Sciences 347 (2014): 143–147.

Giannoccaro MP et al, “Small Nerve Fiber Involvement In Patients Referred For
Fibromyalgia,” Muscle Nerve 49 (2014): 757–759.

Oaklander AL, et al, “Objective evidence that small-fiber polyneuropathy underlies
some illnesses currently labeled as fibromyalgia,” Pain 154, No. 11 (November 2013).

Oaklander AL, et al, “Evidence of Small-Fiber Polyneuropathy in Unexplained,
Juvenile-Onset, Widespread Pain Syndromes,” Pediatrics 131 No. 4 (2013).

Uceyler N et al, “Small fibre pathology in patients with
fibromyalgia syndrome,” Brain 136 (2013): 1857–1867.

Soon we will be posting a summary of the talk with bibliography and a full video of the talk including the Question and Answer period. We will notify you via our Newsletter when these items are available.

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Study recruiting Fibromyalgia Patients - Boston area PDF Print E-mail

The Pain Management Center at Brigham & Women's Hospital is recruiting female Fibromyalgia patients for a study involving functional MRI imaging and cognitive behavioural therapy. See flyer for more information and to inquire about participating.

CDC Funding Update: The Importance of Lobbying PDF Print E-mail

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.

New Medicare payment for chronic care management PDF Print E-mail

Beginning January 1, 2015, Medicare pays separately under the Medicare Physician Fee Schedule CPT code 99490, for non-face-to-face care coordination services furnished to Medicare beneficiaries with multiple chronic conditions. Learn more.

Links to recent U.S. government reports on ME/CFS PDF Print E-mail

Institute of Medicine report:
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, February 10, 2015

National Institutes Of Health, Pathways to Prevention (P2P) Workshop report:
Advancing the Research on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, December 9–10, 2014

Agency for Healthcare Research and Quality, Research Review (“Evidence review”):
Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, December 9, 2014

U.S. Food and Drug Administration, Patient-Focused Drug Development Initiative report:
Chronic Fatigue Syndrome and Myalgic Encephalomyelitis, September, 2013

National Institutes Of Health, State of Knowledge Workshop report:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Research, April 7-8, 2011

Stuck? Four Months of Almost Nothing PDF Print E-mail

In this “op ed” piece, Dr. Alan Gurwitt, Chair of the Medical Advisory Committee and past President of the Massachusetts CFIDS/ME & FM Association, outlines steps for more patient/advocate coordination and strong action in response to the IOM and P2P reports. Read it here.

What is your response to the IOM Report? What were your earliest symptoms of ME/CFS? PDF Print E-mail

"What is your response to the IOM Report?" (Survey conducted by Massachusetts CFIDS/ME & FM Association between Feb 32 and March 20, 2015)

"What were your earliest symptoms of ME/CFS?" (Survey conducted by Massachusetts CFIDS/ME & FM Association March 30 – April 18, 2015)

The results of these two surveys are now available.

IOM Report Survey. The 86 responses to the IOM Report survey represented a range of opinion from highly positive to dismissive, and most were thoughtful and showed a good understanding of the contents of the report. All of the responses were provided to the CFSAC IOM/P2P Working Group members (as indicated would be done in the Introduction to the survey), and a sampling/summary of responses is published here.

Early Onset Symptoms Survey. This survey received 800 responses and included many comments.The survey is not scientific, but the large number of responses makes it significant.The results suggest that the symptoms in the first few months of the illness (or what later turns into ME/CFS) are quite heterogeneous, with fatigue and cognitive impairment occurring most frequently. Clearly this is an area that deserves further study. If the disease (or the triggering events, such as infectious mononucleosis or a severe flu-like illness) is recognized early and proper treatment/management is provided (e.g. rest as needed), perhaps fewer people would develop the severe, chronic form which we identify as “ME/CFS.” Results are summarized here.

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View videos of recent lectures

View the video of Dr. Anthony Komaroff's 2013 lecture, "CFS Research: Recent Progress and Challenges"

View the video of Dr. Jo Solet's lecture, “The Science of Sleep.”

View the video of Dr. Byron Hyde's lecture, “Why Doctors Can’t Diagnose and What Tests Should be Considered.”

View the video of Dr. David Bell's lecture, "25 Year Follow-up in Chronic Fatigue Syndrome: Rising Incapacity."

View the video of Dr. Anthony Komaroff's 2010 lecture, "The Latest Research on CFS."

NOTICE  July 2012
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 CFS/CFIDS/ME. 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.

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