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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

Help publicize the event!  Get the flyer.

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

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.

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.

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]

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.

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