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APRIL 2016

RESEARCH 1ST NEWS | APRIL 2016

I am thrilled to share with you that the Solve ME/CFS Initiative has received a coveted award from the Robert Wood Johnson Foundation (RWJF) and Genetic Alliance to boost our BioBank services and create a sophisticated Patient Registry for ME/CFS. This grant award will make it possible for us to launch a truly national, state-of-the-art patient registry for the disease, which remains an unmet and urgent need in the community. You can read more about the award in this issue, and we’ll be providing updates as we roll out this new portal in the months ahead.

On the topic of research improvements, I am always encouraged when there is a new investment from the NIH in ME/CFS, as they recently conveyed in their Notice of Availability of Administrative Supplements on ME/CFS. According to the NIH, the Administrative Supplements “are intended to expand existing research on ME/CFS, or utilize and apply a new technology to study ME/CFS through supplements to NIH-funded grant awards.” While this effort by the NIH to “bolster research on ME/CFS” is promising, it is perhaps better on paper than in practice. Read More...

Yours,

Zaher Nahle
Vice President for Research and Scientific Programs
Solve ME/CFS Initiative

RESEARCH ROUNDUP

 

SMCI Receives Robert Wood Johnson Foundation Award

The Solve ME/CFS Initiative has received an award through the Robert Wood Johnson Foundation White Label PEER (Platform for Engaging Everyone Responsibly) program. The competitive grants program is managed by Genetic Alliance, which represents 10,000 organizations, 1,200 of which are disease organizations. Sharon Terry is Genetic Alliance President and CEO and a visionary behind PEER and the RWJF White Label project.

The Solve ME/CFS Initiative was one of only six disease-related organizations to be selected to participate in the program and utilize PEER to engage our community in participant-centric research.


TO READ MORE, GO HERE.

RESEARCH ROUNDUP

 

SMCI Co-Submits Testimony to Congress

The Solve ME/CFS Initiative has endorsed Outside Witness Testimony that was submitted to the House and Senate subcommittees on Health-related Appropriations April 15. The document was drafted by the US Action Working Group and spearheaded by Charmian Proskauer, President of the Massachusetts. CFIDS/ME & FM Association.


TO READ MORE, GO HERE.

 

Dr. Zaher Nahle Serves on CDC Workgroup

Dr. Zaher Nahle, the Solve ME/CFS Initiative’s Vice President for Research and Scientific Programs, is serving as a member of the Centers for Disease Control and Prevention’s new Technical Development Workgroup (TDW) for ME/CFS. The CDC has formed the group to ensure that any educational materials on ME/CFS are evidence-based, understandable and useful to stakeholders.

TO READ MORE, GO HERE.

 

NEWS AND EVENTS

 

Register for April 21 Webinar with Dr. Avi Nath

On April 21, the Solve ME/CFS Initiative will host a webinar with Avindra Nath, MD, Clinical Director at the National Institutes of Health’s National Institute of Neurological Disorders and Stroke. Dr. Nath is Principal Investigator of NIH’s new intramural study on ME/CFS. The free webinar will take place at 1 p.m. Eastern time on April 21.To register for the Solve ME/CFS Initiative webinar, go here.

TO READ MORE, GO HERE.

 

CFSAC Webinar Scheduled for May 17-18

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) has scheduled a webinar for May 17-18 from Noon to 5 p.m. Eastern time, on each of the two days. This will not be an in-person meeting. Additional details will be available later this month regarding how patients can attend online.

CFSAC provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to ME/CFS. The Solve ME/CFS Initiative is a non-voting member of CFSAC.

 

SUPPORT US

 

To support our important work, please visit SolveCFS.org/Donate. Consider joining our Sustainers Circle, where your monthly gift ensures we can move forward toward making ME/CFS understood, diagnosable and treatable. 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: Research1st@solvecfs.org
5455 Wilshire Blvd., Suite 806, Los Angeles, CA. 90036

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