Trans-NIH ME/CFS Working Group

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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."[1]

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[2]

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."[3]

NIH press release[edit | edit source]

NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome[4]

Formation announcement[edit | edit source]

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."[5]

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."[6]


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.”'[7]


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)[8]

Dr. Francis Collins' CFS comments[9] 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."[10]

Working group members[edit | edit source]

  • 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
  • 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[edit | edit source]

Online presence[edit | edit source]

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. "MECFS". National Institutes of Health (NIH). Retrieved Aug 7, 2018. 
  2. "MECFS". National Institutes of Health (NIH). Retrieved Aug 7, 2018. 
  3. Trans-NIH Working Group
  4. "NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". National Institutes of Health (NIH). Oct 29, 2015. Retrieved Aug 7, 2018. 
  5. "NIH announces new effort to tackle chronic fatigue syndrome". Washington Post. Retrieved Aug 7, 2018. 
  6. Khazan, Olga (Oct 29, 2015). "Chronic Fatigue Syndrome Patients Are Finally Getting the Research Attention They Deserve". The Atlantic. Retrieved Aug 7, 2018. 
  7. "NIH refocuses research into chronic fatigue syndrome". Science | AAAS. Oct 29, 2015. Retrieved Aug 7, 2018. 
  8. 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)
  9. "Those outside US that cannot get Dr. Collins of NIH on Charlie Rose - CFS briefly addressed. | CFS". Voat. Retrieved Aug 7, 2018. 
  10. "Chronic fatigue syndrome recognized at last". SFChronicle.com. Nov 10, 2015. Retrieved Aug 7, 2018. 
  11. "NIH ME/CFS Advocacy Call". National Institutes of Health (NIH). Mar 10, 2016. Retrieved Aug 7, 2018. 
  12. "Whittemore presents ME/CFS proposal to NIH, May 26, 2016 | #MEAction". www.meaction.net. Retrieved Aug 7, 2018. 

National Institutes of Health (NIH) - A set of biomedical research institutes operated by the U.S. government, under the auspices of the Department of Health and Human Services.

myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

ME/CFS - An acronym that combines myalgic encephalomyelitis with chronic fatigue syndrome. Sometimes they are combined because people have trouble distinguishing one from the other. Sometimes they are combined because people see them as synonyms of each other.

chronic fatigue syndrome (CFS) - A fatigue-based illness. The term CFS was invented invented by the U.S. Centers for Disease Control as an replacement for myalgic encephalomyelitis (ME). Some view CFS as a neurological disease, others use the term for any unexplained long-term fatigue. Sometimes used as a the term as a synonym of myalgic encephalomyelitis, despite the different diagnostic criteria.

chronic fatigue syndrome (CFS) - A fatigue-based illness. The term CFS was invented invented by the U.S. Centers for Disease Control as an replacement for myalgic encephalomyelitis (ME). Some view CFS as a neurological disease, others use the term for any unexplained long-term fatigue. Sometimes used as a the term as a synonym of myalgic encephalomyelitis, despite the different diagnostic criteria.

genome - an organism’s complete set of DNA, including all of its genes

National Institutes of Health (NIH) - A set of biomedical research institutes operated by the U.S. government, under the auspices of the Department of Health and Human Services.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.