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july 2015

Research 1st News | July 2015

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Last month’s long-awaited briefing on the National Institute of Health’s Pathways to Prevention (P2P) report on ME/CFS failed miserably at continuing the momentum created earlier this year by the Feb. 10 Institute of Medicine publication on the disease.

The final report itself varied little from the original draft. Key comments are still omitted, notably those related to the dearth of research funding. The economic burden was diminished as well; the final P2P report placed it at $2 to $7 billion, compared with the much more substantial—and arguably more accurate—sum of $17 to $24 billion estimated by the IOM.

As disappointing as the P2P report was, we will not let it derail our own efforts to make ME/CFS understood, diagnosable and treatable. We must realize that while the P2P process was woefully inadequate in identifying research needs, it will not stop the good work of research organizations like ours that are funded through the generosity of patients and their families. We will continue to execute on our ambitious multiyear research plan and persist in our demands for an equitable level of federal research funding to bring help to those whose lives have been stolen by this insidious illness. Anything less is inhumane.

Warmest Regards,

Carol E. Head
President
Solve ME/CFS Initiative

Research Roundup

 

NIH Issues Final Pathways to Prevention Report on ME/CFS

The National Institutes of Health released its final documents ensuing from its 2014 Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. NIH published the following reports in the Annals of Internal Medicine on June 16:

NIH P2P Position Paper
ME/CFS Diagnosis Article
ME/CFS Treatment Article
Editorial by Dr. Anthony Komaroff

 

 

SMCI Announces New VP for Research and Scientific Programs

The Solve ME/CFS Initiative has announced the appointment of Zaher Nahle, PhD, MPA, as its Vice President for Research and Scientific Programs, effective June 29. Dr. Nahle has a PhD in Physiology and Biophysics from Cold Spring Harbor Laboratory and Stony Brook University and a Master in Public Administration from Harvard University’s John F. Kennedy School of Government. Dr. Nahle also completed post-doctoral fellowships at Harvard and Stony Brook. He emerged as the clear choice for the position after a rigorous two-month international search, which included many extraordinary candidates.

TO READ THE FULL ARTICLE, GO HERE 

News and Events

 

SMCI Hosts Webinars in June and July

On June 18, the Solve ME/CFS Initiative hosted a webinar with Dr. Lily Chu called, “Post-Exertional Malaise: History, Characteristics, Evidence.” Dr. Chu has followed up with her responses to questions that were unable to be answered during the webinar due to time limitations. To read the follow-up Q&A, go here. To view the YouTube recording of the webinar, go here. ​

The next SMCI webinar is July 16 with Dr. Peter Rowe, director of the Chronic Fatigue Clinic at Johns Hopkins Children’s Center. To register for the July 16 webinar, go here. ​

 

Solve ME/CFS Initiative Reappointed to CFSAC Position

The Solve ME/CFS Initiative has been reappointed as one of the liaison organizations for the Chronic Fatigue Syndrome Advisory Committee (CFSAC) for the term May 2015 through May 2017.

CFSAC provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis and chronic fatigue syndrome. Read more...

For a complete list of CFSAC members, go here.

Support uS

 

Please consider joining our Sustainers Circle, where your monthly gift ensures our good work can move forward, and we can continue to bring you this free monthly resource! Visit SolveCFS.org/Donate and get started today.

At the Solve ME/CFS Initiative, we are about turning hope into action. It is donations from people just like you that make progress possible.  

Thank You!

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Please feel free to contact our office if you have any questions.
Phone: 704-364-0016
Email: SolveCFS@SolveCFS.org
Address: P.O. Box 36007, Los Angeles, CA 90036-0007

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