Research 1st News | NOVEMBER 2015

I am thrilled to share with you that that a huge step forward has been taken today at the National Institutes of Health. Having absorbed the gravity and veracity of the Institute of Medicine report on ME/CFS, the NIH has taken action regarding its commitment to this devastating disease. As you’ll read in the article below, the NIH announced four key changes with regard to ME/CFS: 1) an important “home” within one institute–the National Institute of Neurological Disorders and Stroke (NINDS); 2) A new intramural research study; 3) Renewed focus on extramural research; and 4) a re-invigorated Trans-NIH Working Group.

With these actions, ME/CFS, which has been demonstrably underfunded by NIH for decades, has now been significantly elevated at the federal level. NIH exists to fund research to support the health of Americans and it is now stepping up its commitment to ME/CFS. This new emphasis has been championed by Dr. Francis Collins, Director of the National Institutes of Health, with strong support from Dr. Walter Koroshetz, Director of NINDS, who will be leading the charge. Dr. Koroshetz is new to his position and has personally seen the devastation of the disease on patients in his clinical practice. Several ME/CFS patient organizations have advocated directly with these two NIH leaders. I was pleased that Dr. Koroshetz personally called me late yesterday to share the good news and express his enthusiasm for this new effort.

We’re optimistic that a new chapter in the long history of this devastating disease has begun today. When our Research Director Dr. Zaher Nahle and I met with NIH leadership earlier this month, we agreed to work in partnership with NINDS to provide guidance, propose prospective ME/CFS researchers and provide input from patients. While we have a long way to go and will need significant funding to solve this complex, multi-system disease, these changes at NIH appear to signal a new era. Our organization will continue to be vigilant in both conducting our own research and providing input to NIH to speed progress.

On behalf of all the many patients who suffer, onward!

Warmest Regards,

Carol E. Head
Solve ME/CFS Initiative



NIH Announces New Efforts to Advance ME/CFS Research

The National Institutes of Health announced today that it is taking two major steps to advance research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. NIH has assigned the National Institute of Neurological Disorders and Stroke (NINDS) as the lead of a multi-institute ME/CFS research effort and a re-invigorated Trans-NIH ME/CFS Research Working Group. NIH also is launching a research protocol at the NIH Clinical Center to intensely study individuals with ME/CFS. The move is a landmark one for ME/CFS, which has previously been housed in the Office of Research on Women’s Health and did not receive the attention or funds that a disease with its burden merits.

“Of the many mysterious human illnesses that science has yet to unravel, ME/CFS has proven to be one of the most challenging,” said NIH Director Francis S. Collins, M.D., Ph.D. “I am hopeful that renewed research focus will lead us toward identifying the cause of this perplexing and debilitating disease so that new prevention and treatment strategies can be developed.”




Nov. 19 Webinar with Dr. Dane Cook

On Nov. 19, the Solve ME/CFS Initiative will hold a webinar with Dr. Dane B. Cook. Dr. Cook is the Co-Director of the Exercise Psychology laboratory at the University of Wisconsin-Madison and Director of the Marsh Center for Research in Exercise and Movement. He received his Master’s and Doctoral degrees at the University of Georgia and post-doctoral training in neuroscience at the University of Medicine and Dentistry in Newark, N.J. The webinar, “Post-Exertion Malaise: The Intersection of Biology and Behavior” will be held at 1 p.m. Eastern time. To register for the November webinar, go here. ​

On Dec. 17, Dr. Zaher Nahle, the Solve ME/CFS Initiative’s Vice President for Research and Scientific Programs, will hold a research roundup from the past year. To register for the December webinar, go here.



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