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Introducing the Common Data Elements Working Group

February 10, 2017

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 […]

February 2017 Research 1st – Dr. Nahle Letter

February 10, 2017

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 […]

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

January 26, 2017

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 […]

What Will CFSAC Look Like in 2017?

January 20, 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 […]

Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Summary

January 20, 2017

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 […]

Meeting with an ME/CFS Champion in our Congress

January 20, 2017

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 […]

Listen to Carol Head’s Rousing CFSAC Presentation

January 20, 2017

SMCI President Carol Head delivered a hard-hitting call to action during her presentation to CFSAC, providing specific recommendations to each agency for improvements in the handling of ME/CFS. Carol was the first at the meeting to call ME/CFS a “public health crisis” before adding that […]

Non-Invasive Diagnostic Test Project Seeks to Detect ME/CFS

January 13, 2017

This week, we highlight the Cathleen J. Gleeson PhD Fund and our collaborative partnership with the University of Washington on diagnostic testing in ME/CFS. This study of diagnostics and metabolic imaging uses advanced, non-invasive magnetic resonance spectroscopy (MRS) to measure muscle metabolites in ME/CFS patients […]