Trans-NIH ME/CFS Working Group

The Trans-NIH Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Working Group or the Trans-NIH ME/CFS Working Group is described as the following on it website:

"'Established in 1999, the Trans-NIH Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Working Group includes representatives from NIH Institutes, Centers, and Offices within the NIH Office of the Director. Working as a team with leadership from the National Institute of Neurological Disorders and Stroke (NINDS), the Trans-NIH ME/CFS Working Group identifies shared areas of interest and challenges to advance ME/CFS research. The Working Group provides evidence-based rationales for supporting ME/CFS research and attracting investigators to study this complex illness to NIH Institutes, Centers, and Offices. In addition, the Working Group works to leverage resources across NIH, such as personnel, equipment, methodology, supplies, and collaborative expert networks.'"

Goals:


 * Advance research on the cause, prevention, diagnosis, pathophysiology and treatment of ME/CFS
 * Encourage biomedical research investigators and organizations to study ME/CFS
 * Communicate ME/CFS research information among and between NIH Institutes and Centers, and the NIH Office of the Director

On October 29, 2015, the Director of the National Institutes of Health, Francis Collins, announced "launching a research protocol at the NIH Clinical Center to intensely study individuals with ME/CFS and re-invigorating the efforts of the long-standing Trans-NIH ME/CFS Research Working Group with the National Institute of Neurological Disorders and Stroke (NINDS) as the lead of a multi-institute research effort."

NIH press release
NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Formation announcement
NIH announces new effort to tackle chronic fatigue syndrome

Washington Post To Your Health Section By: Lenny Bernstein

" ...the mysterious, debilitating condition that disables many of its more than 1 million Americans who have it."

A Boost for Chronic Fatigue Syndrome Research

The Atlantic By: Olga Khazan

" ...strengthen its efforts to find the roots of a mysterious disorder known as Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis."

NIH refocuses research into chronic fatigue syndrome

AAAS-Science Insider By: Jon Cohen

"The attitude among many researchers has been “maybe this is an unsolvable problem, let’s just work on something else,” Collins says. “I’m happy to say we’re countering that attitude rather strongly here.”'

Charlie Rose Interview with Dr. Francis Collins - Video

Charlie Rose Show

Dr. Francis Collins, director of the National Institutes of Health, discusses the Precision Medicine Initiative and the BRAIN Initiative. (CFS discussion begins at 16:00)

Dr. Francis Collins' CFS comments Transcribed By: Russel Flemming Firestormmer on Twitter

Chronic fatigue syndrome recognized at last

San Francisco Chronicle By: Rivka Solomon

"After 30 years of neglect, the federal government promised late last month to bolster research on myalgic encephalomyelitis/chronic fatigue syndrome — the equivalent of promising to help multiple sclerosis or Parkinson’s, two other important neurological diseases with no known cause or cure. Thanks to years of prodding by patient advocates, the National Institutes of Health now understands myalgic encephalomyelitis is a serious disease that brings significant functional impairment."

Working group members

 * Walter Koroshetz, M.D., Chair, National Institute of Neurological Disorders and Stroke


 * Vicky Holets Whittemore, Ph.D., NIH Representative to HHS CFS Advisory Committee, National Institute of Neurological Disorders and Stroke


 * Harvey J. Alter, M.D., MACP, NIH Clinical Center


 * Catherine Bennett, Ph.D. (Alternate: Christine Melchior, Ph.D.), NIH Center for Scientific Review


 * Joseph Breen, Ph.D. (Alternate: Joshua Milner, M.D.), National Institute of Allergy and Infectious Diseases


 * Milton Corn, M.D., National Library of Medicine


 * Emmeline Edwards, Ph.D., National Center for Complementary and Integrative Health


 * Basil Eldadah, M.D., Ph.D., National Institute on Aging


 * Bill Elwood, Ph.D., Office of Behavioral and Social Science Research


 * Yolanda Vallejo-Estrada, Ph.D., National Institute of Dental and Craniofacial Research


 * Adam Felsenfeld, Ph.D., National Human Genome Research Institute


 * Rohan Hazra, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development


 * Mike Humble, Ph.D., National Institute on Minority Health and Health Disparities


 * Joyce Hunter, Ph.D., National Institute on Minority Health and Health Disparities


 * Kathy Jung, Ph.D., National Institute on Alcohol Abuse and Alcoholism


 * Cheryl Kitt, Ph.D., NIH Office of Extramural Research


 * Martha Matocha, Ph.D. (Alternate: Leorey Saligan, Ph.D., RN, CRNP), National Institute of Nursing Research


 * Cheryl L. McDonald, M.D. (Alternate: Shimian Zou, Ph.D.), National Heart, Lung, and Blood Institute


 * Christopher Mullins, Ph.D., National Institute of Diabetes and Digestive and Kidney Diseases


 * Ann O’Mara, Ph.D., R.N., M.P.H., National Cancer Institute


 * Matthew Rudorfer, M.D., National Institute of Mental Health


 * David Thomas, Ph.D., National Institute on Drug Abuse


 * Todd Wilson, D.O. (Alternate: David Eckstein, Ph.D.), National Center for Advancing Translational Research


 * James Witter, M.D., Ph.D., National Institute of Arthritis and Musculoskeletal and Skin Diseases


 * Steve Zullo, Ph.D., National Institute on Biomedical Imaging and Bioengineering

Talks and interviews

 * 8 May 2016, NIH ME/CFS Advocacy Call with Dr. Francis Collins, Dr. Walter Koroshetz, Dr. Vicky Whittemore, Dr. Avindra Nath, and Dr. Brian Walitt
 * 26 May 2016, Presentation of ME/CFS Working Group goals to the NIH Advisory Meeting by Dr. Vicky Whittemore
 * 2 Nov 2016, NIH ME/CFS Advocacy Call - Recorded call and transcript with Dr. Walter Koroshetz, Dr. Vicky Whittemore, Dr. Joseph Breen, and Dr. Avindra Nath
 * 1 Feb 2017, NIH ME/CFS Advocacy Call - Recorded call and transcript with Dr. Walter Koroshetz, Dr. Vicky Whittemore, Dr. Joseph Breen, and Dr. Avindra Nath
 * 28 Nov 2017, NIH ME/CFS Advocacy Call - Recorded call and transcript with Dr. Walter Koroshetz, Dr. Vicky Whittemore, Dr. Joseph Breen, and Dr. Avindra Nath
 * 7 Mar 2018, NIH ME/CFS Advocacy Call - Recorded call and transcript with Dr. Walter Koroshetz, Dr. Vicky Whittemore, Dr. Joseph Breen, Dr. Avindra Nath and Dr. Ian Lipkin
 * 19 Jul 2018, ME/CFS Advocacy Call - Recorded call and transcript with Dr. Walter Koroshetz, Dr. Avindra Nath, Dr. Joseph Breen, and Dr Anthony Komaroff

Online presence

 * Trans-NIH Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Working Group Website

Learn more

 * May 2016, Current Activities of the Trans-NIH ME/CFS Working Group by Vicky Whittemore, PhD, Program Director
 * 2016, NINDS to consider recommendations from ME/CFS advocates
 * Working group members