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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Coming Nov. 14, 2015 - Fibromyalgia and Small Fiber Polyneuropathy PDF Print E-mail

New research from Massachusetts General Hospital shows that about 40% of patients with fibromyalgia have abnormal skin biopsies that show small fiber polyneuropathy (SFPN). Several other research teams published similar data and confirmed these findings. Fibromyalgia shares many symptoms with small fiber polyneuropathy (SFPN), including wide-spread pain, reduced endurance, fuzzy thinking, frequent headaches, and sometimes GI or bladder symptoms.

“These findings suggest that some patients with chronic pain labeled as fibromyalgia have unrecognized SFPN, a distinct disease that can be tested for objectively and sometimes treated definitively” – Dr. Anne Louise Oaklander, Researcher at the MGH Nerve Unit

The Massachusetts CFIDS & FM Association Presents:

Fibromyalgia and Small Fiber Polyneuropathy
Khosro Farhad, MD
Newton-Wellesley Hospital
Shipley Auditorium in the Bowles Conference Center
November 14, 2015 at 1 PM

Dr. Farhad is a neurologist specializing in peripheral nerve. He is affiliated with the Massachusetts General Hospital Nerve Unit. He provides medical care for patients with fibromyalgia, small fiber polyneuropathy and other neuromuscular disorders. He can test patients for SFPN with a skin biopsy removed from the leg under local anesthesia. A positive test shows degeneration of the small fiber nerves. For patients newly diagnosed with SFPN, potentially treatable causes can be sought from the patient’s medical history and blood tests. The MGH team is conducting research on treatment options. The research suggests that SFPN might possibly be linked to some cases of ME/CFS.

The program will also include an overview of Fibromyalgia from the clinical perspective: presentation, diagnosis and treatments. 

Register now

Online registration will close at midnight Thursday, Nov. 12, 2015. Walk-ins are always welcome.

Members are admitted free; for non-members and guests a $15 donation is suggested.

You can renew or become a member online.

Directions and parking information

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.

Restore funding for CDC’s ME/CFS research PDF Print E-mail

The funding for the CDC ME/CFS program has been cut to ZERO in the senate version of the budget appropriations bill. If this stands, a major research program (the “multi-site study”) is threatened. While most of the CDC disease areas are level-funded, under the Senate's version of the appropritions bill ME/CFS will receive NOTHING.

CDC Funding for CFS is ZERO!

We have only a few days to get this reversed. When the senators return from their August vacation, the appropriations bill will go to conference committee, where, with enough support, the funding can be restored. WE NEED TO MAKE THIS HAPPEN.

We need to flood the in-boxes of the four staffers who work on this bill:
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If you live in Massachusetts, please send a copy of your letter to Sen. Elizabeth Warren, who is a member of the Senate Committee on Health, Education, Labor, and Pensions, using this form:

Your note can be brief and simple. To make the most impact, use the subject line “Please restore CDC funding for Chronic Fatigue Syndrome”.
Here’s a sample letter; feel free to customize it!

Subject: Please restore CDC funding for Chronic Fatigue Syndrome

I understand that the Senate Appropriations Committee has recommended that funding for the CDC’s programs for Chronic Fatigue Syndrome be terminated as of 2016.

I am a patient (family member of a patient/caregiver for a patient) with Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis or ME/CFS. The Institute of Medicine has just issued a major report on this “serious, chronic, complex, multisystem disease” citing the devastation on the lives of the 836,000 to 2.5 million Americans who suffer from this devastating disease, the $20 billion annual cost to society, and the enormous need for more research which can lead to better treatments and a cure. We need MORE money for research, medical education, and information for patients and their families, NOT a termination of support.

I urge you to reinstate the $5.4 million funding for the CDC/CFS programs immediately.

[Your name]
[Your email address]
[Your USPS Address]

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.

Important update on Disability issues PDF Print E-mail

The Massachusetts CFIDS/ME & FM Association Disability Committee recently met with Mala Rafik and Kate Sullivan, two very knowledgeable disability attorneys at the firm of Rosenfeld, Rafik, and Sullivan in Boston. Both attorneys are familiar with the current issues and problems patients encounter as they go through the disability claims processes.

This report outlines some of these problems – as well as how patients, their doctors, and their attorneys can properly respond to them.

Read more.


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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