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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.

 
What were your first symptoms of ME/CFS? PDF Print E-mail

Please tell us!

Are the new IOM diagnostic criteria accurate for early onset illness? What were your first symptoms of ME/CFS?

Let us know in our new 3-minute survey!

Summarized results will be used to inform the CFSAC IOM Working Group. The survey will be open until midnight (U.S. Eastern Time) April 17, 2015.

 
Register now for May 2nd Research RoundTable PDF Print E-mail

Registration is now open for the Research RoundTable on May 2, 2015, at Newton Wellesley Hospital from 1 - 3:30 p.m., with check-in beginning at 12:30 p.m.

Members attend free! To save time, become a member or renew your membership now.

Learn more and register for this exciting event!

 
Help fund ME/CFS Research - Spring 2015 PDF Print E-mail

“Remarkably little research funding has been made available to study the cause of ME/CFS, mechanisms associated with the development and progression of the disease, or effective treatment, especially given the number of people affected.” ~Institute of Medicine Report Brief

We all fervently wish and hope there will be more money for research on ME/CFS—the causes, treatments and possible cures. The National Institutes of Health have provided pitifully small amounts of research funding every year, and everyone hopes that will change as a result of the Institute of Medicine (IOM) and NIH’s own Pathways to Prevention reports, both of which call for substantial increases in funding for ME/CFS.

At a recent briefing in Washington DC concerning the IOM Report, Carol Head, SMCI President and CEO stated, there are "no credible barriers now to increased research funding." But while we are working for this, smaller, privately-funded research foundations are raising money and carrying out their own research programs with the help of excellent scientists and clinicians.

Massachusetts CFIDS/ME & FM Association is pleased to participate in these efforts. This year, the pooled contributions from our Spring Funds For Research campaign will be donated to the research program of the Solve ME/CFS Initiative.

The Solve ME/CFS Initiative (SMCI) has pioneered several innovations in their research program.

  • First, SMCI provides competitive grants to seed new research and recruit new investigators into the field. Successful pilot studies often result in substantial follow-on grants (from other sources) to continue the investigator’s work.
  • Second, the Research Institute Without Walls provides the infrastructure for investigator to share, collaborate and accelerate the pace of discovery and sparks new lines of inquiry.
  • Finally, the SolveCFS BioBank™ provides a ready resource of “well characterized” patients and healthy controls for studies, and allows patients to register to participate in research efforts.

Yes, I can help!

About Solve ME/CFS Research Grants

2008 Funded Investigators Progress Report

Six awards totaling $647,940 were made to investigators in the US and Canada. The important seed money that the 2008 funding cycle provided led to more than $10 million in follow-on funding from federal agencies for many of these investigators.

2011 Funded Investigators Progress Report

Six grants were awarded totaling $470,487 to investigators in the US and Canada. To date this funding has led to more than $1.6 million in additional funding for our grantees.

2015 work is focusing on executing the epigenetic study funded by a $500,000 grant received in 2014, and expanding the BioBank, further advancing the work on finding a biomarker.

Yes, I can help!

Learn more at our Research Roundtable, May 2, 2015.

Register for the Research RoundTable

 
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.

 
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