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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.

 
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.

 
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.

 
Does Advocacy Work, P2P Edition PDF Print E-mail

With all the discussion around the Institute of Medicine ME/CFS report, have you thought about the Pathways To Prevention report lately? The final report, to give guidance to the National Institutes of Health on future funding ME/CFS research (including a recommendation for funding Centers of Excellence for ME/CFS) and to review treatment recommendations, has been delayed. Find out why in "Does Advocacy Work, P2P Edition - Good News and Bad News."

UPDATE: The Office of Disease Prevention promises to change the way public comments are handled in the future. "For future P2P workshops, public comments will be posted online as they are submitted to enhance the transparency of this process and to ensure that all comments are received by the panel in a timely manner."

Read our letter to the Office of Disease Prevention (ODP), and ODP's response.

 
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