Will You Help Us Fight ME/CFS Next Year? You’ve probably already heard about our $75,000 matching challenge, but did you know that it applies to our ADVOCACY program too? We hope you’ll consider giving a gift to Solve M.E. in support of our Advocacy and Community Relations program. Check out this message from our Director […]

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Introducing the Common Data Elements Working Group

The National Institutes of Health (NIH), in partnership with the Centers for Disease Control and Prevention (CDC), has recently launched the Common Data Element (CDE) Working Group with the intent to streamline medical and research terminology in ME/CFS. The ultimate goal of this ambitious project is to standardize the collection, analysis, and comparison of data […]

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February 2017 Research 1st – Dr. Nahle Letter

Dear Friends, On January 27, the National Institutes of Health (NIH) posted two competitive funding opportunities: one for collaborative research centers (CRCs, U54) and another for a data management and coordinating center (DMCC, U24). This was followed by a call with the ME/CFS community in which Dr. Koroshetz, the director of the National Institute of […]

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Carol Head Participates in Meeting at UCLA Clinical and Transitional Science Institute

The goal of clinical and translational science institutes (CTSIs) is to combine disciplines, resources, expertise, and techniques to promote enhancements in prevention, diagnosis, and therapies. There are now CTSI’s at most leading research universities. The UCLA CTSI is a dynamic partnership of four institutions in the Southern California area. Located just six miles from Solve ME/CFS […]

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Jen Brea’s ME/CFS TED Talk Gets over 365,000 Views in First Week; Documentary Film Unrest Premieres at Sundance Film Festival

Jen Brea’s much-anticipated TED Talk, “What happens when you have a disease doctors can’t diagnose,” discussing the stigmatization of hard-to-understand diseases went live on January 17. Since its release, it has received over 394,000 views, giving ME/CFS excellent exposure to the public at large and likely introducing it to many individuals who had not previously […]

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What Will CFSAC Look Like in 2017?

January’s meeting was technically the concluding meeting of 2016, as a second meeting was not convened last year. Commander Gustavo Seinos, the designated federal officer assigned to coordinate CFSAC, announced there will be at least two additional CFSAC meetings in 2017. All CFSAC business is publicly available and governed by the Federal Advisory Committee Act. […]

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Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Summary

On January 12 and 13, the Federal Chronic Fatigue Syndrome Advisory Committee (CFSAC) met in Washington DC for one of its biannual meetings. CFSAC works to provide advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This […]

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Meeting with an ME/CFS Champion in our Congress

Prior to last week’s federal CFSAC meeting, SMCI’s advocacy team visited with Congresswoman Zoe Lofgren of California who, together with colleague Congresswoman Anna Eshoo of California, sponsored the powerful congressional ME/CFS letter to National Institutes of Health (NIH) Director Collins in September 2016. Congresswoman Lofgren met with SMCI President Carol Head, SMCI Board Members Mary […]

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