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National Institutes of Health Conferences Demonstrate ME/CFS Progress: How Far We’ve Come and How Far We Need to Go

Solve M.E.’s Chief Scientific Officer, Dr. Sadie Whittaker, introducing a clinician panel discussion with Solve M.E. Research Advisory Council members Tony Komaroff (moderator), Dr. Lucinda Bateman, Dr. Susan Levine, Dr. Jose Montoya, Dr. Peter Rowe, and Simmaron’s Dr. Dan Peterson at the NIH conference
Last week, people with ME/CFS, researchers, and clinicians gathered at the National Institutes of Health (NIH) in Bethesda, MD, for a two-day conference on “Accelerating Research on ME/CFS”. Nearly thirty presentations from researchers and clinicians demonstrated we have achieved greater scientific and clinical understanding of the disease. Various research groups are bringing impressive methods and tools to study critical areas of science and NIH has made commitments through the trans-NIH working group, Collaborative Research Centers and an intensive intramural study of post-infectious ME/CFS. The National Advisory Neurological Disorders and Stroke (NANDS) Council Working Group for ME/CFS Research, which includes Solve M.E.’s CEO and President Carol Head,  has been charged with providing guidance on how best to advance research in ME/CFS at NIH.However, as Dr. Anthony L. Komaroff (Solve M.E. Research Advisory Council) noted in his summary of the conference, it is also clear that we have a long way to go.

Conference Highlights

Speakers addressed a number of findings in the scientific fields relevant to ME/CFS, including  immunology, metabolism, the microbiome, genetics, neuroinflammation, and autonomic dysfunction. Expert clinicians spoke about clinical presentations of the disease, best current practices to address certain symptoms (e.g. orthostatic intolerance), and potential future directions in diagnosis and treatment. View the full agenda here and check out Dr. Komaroff’s summary presentation at 06:02:00 on Day 2 of the conference here.

Particularly galvanizing was the number of young investigators in attendance at the “Thinking the Future Conference” event preceding the main conference. Data from FOUR active Ramsay studies were presented, along with projects from a number of exciting young investigators – including an impressive contingent from Dr. Maureen Hanson’s (Solve M.E. RAC) lab at Cornell University. Solve M.E.’s CSO Dr. Sadie Whittaker presented on the Ramsay Grant Program as a key way to bring in bring new researchers to the field.

Be sure to check out the posters on display from Ramsay-supported projects at the end of this email!

Dr. Camille Birch discussing her work during a poster session at NIH. With support from the Ramsay Award Program, Dr. Birch is working with Dr. Liz Worthey to complete a whole genome sequencing ME/CFS study. Read more about the project on our Ramsay microsite here.

Data from Ramsay Award Program studies was also presented during the main “Accelerating Research” conference. Dr. Jarred Younger (Ramsay 2016, University of Alabama at Birmingham) presented data that widespread low-level neuroinflammation is a factor in ME/CFS. These preliminary findings were published in Brain Imaging & Behavior and used in a large grant application to NIH – which Dr. Younger noted at the conference just received a fundable score. Check out this study on our Ramsay microsite here.

Dr. Bhupesh Prusty, an expert virologist from the University of Würzberg in Germany, presented a working model of viral (HHV-6) contribution to altered mitochondria functioning in ME/CFS. Brought into the field by Ramsay funding, Dr. Prusty has deepened his engagement by co-writing a review on chronic viral infection in ME/CFS in the October 2018 edition of Translational Medicine, on behalf of the European Consortium (EUROMENE) on ME/CFS and presenting his work at this conference. Check out this study on our Ramsay microsite here.

In a video report-out from the conference, Dr. Prusty shares his impressions of the field of ME/CFS research, speculates on how to best “accelerate research” on ME/CFS, and talks about how collaborations are formed between researchers: http://go.solvecfs.org/e/192652/FpBMCiqif1I/x6pp8/112388503?h=k86ZOnnx4QYWODkinboyAgwdQroQmSMbEKspo4gkFao

Dr. Jarred Younger and Dr. Bhupesh Prusty presenting their Ramsay-supported research

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