National Institutes of Health
The National Institutes of Health (NIH) is the primary United States government body responsible for biomedical and health research. Francis Collins, MD, PhD, currently serves as director. The NIH campus is in Bethesda, Maryland, US.
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- Oct 2015, the NIH announced its intention to bolster funding for the disease, following the Institute of Medicine report. On 3 Nov 2015 Francis Collins appeared on the Charlie Rose show in the United States and reiterated his commitment to ME/CFS disease research. During the interview he stated "I have been puzzled and frustrated how little we understand this condition" and "you are disabled, you are utterly unable to carry out daily activities". The announcement included the formation of the Trans-NIH Working Group.
- Mar 2016, the NIH confirmed its goal of wanting to issue an RFA (Request For Application) to fund extramural research, in addition to its own intramural (internal) research.
- Apr 2016, the NIH announced it would provide funding for existing grant holders to expand their studies to include ME/CFS patients.
- May 2016, the Trans-NIH ME/CFS Working Group announced a Request for Information (RFI) to solicit input to develop new strategies to guide NIH's research efforts and priority setting for research on ME/CFS.
- Jan 2017, the NIH made an announcement that it intends to commit $6 million in Fiscal Year 2017 in order to fund two to three Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRC) and a Data Management and Coordinating Center (DMCC), which will support the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRC). The goal of the CRC is to perform collaborative research on ME/CFS to inform the etiology, pathogenesis and/or treatment of ME/CFS.
- Jun 2018, The Bateman Horne Center will be an "All of Us" recruitment center for people living with ME/CFS and Fibromyalgia. All of Us is a ten year Precision Medicine Initiative project that has been funded $1.5 Billion to recruit one million patients for its bio-bank. The idea is to research all diseases, from the most common to the most rare while taking into account lifestyle, environment, and biology.
- In March 2019, NIH's NINDS Council Working Group for ME/CFS opened a public comment period to run from March 15, 2019 to May 1, 2019 seeking input on how best to advance ME/CFS research. All stakeholders--"researchers, health care providers, individuals with ME/CFS, patient advocates and health advocacy organizations, scientific or professional organizations, federal agencies, as well as other interested members of the public"--are invited to submit comments, which can be done anonymously if preferred.
Clinical Center Chronic Fatigue Syndrome Study[edit | edit source]
In late 2015 the NIH announced its intention to begin an extensive intramural study of around 40 ME/CFS patients, the NIH Post-Infectious ME/CFS Study.
ME/CFS research funding[edit | edit source]
Patient Jennie Spotila has summarized total ME/CFS NIH funding each year:
- 2012, 2011 NIH Spending on CFS Studies
- 2013, 2012 NIH Spending on CFS Studies
- 2014, 2013 NIH Spending on CFS Studies
- 2015, 2014 NIH Spending on ME/CFS Studies
- 2016, NIH: Who Reviewed Grants in 2015
- 2016, 2015 NIH Spending on ME/CFS Studies
Jennie also tracks NIH RFAs (Requests for Applications) which are invitations from the NIH for researchers to submit applications for funding in specific areas. To date there have been no RFAs for ME/CFS.
The NIH itself also published actual and estimated figures for annual spending for the various diseases.
Notable staff[edit | edit source]
- Francis Collins (NIH Director)
- Walter Koroshetz (Director National Institute of Neurological Disorders and Stroke, Chair Trans-NIH ME/CFS Working Group)
- Vicky Whittemore (ME/CFS Working Group)
- Avindra Nath
- Brian Walitt
ME/CFS awareness[edit | edit source]
Learn more[edit | edit source]
- Wikipedia - National Institutes of Health
- 2011, Demystifying Medicine - Chronic Fatigue Syndrome: Is there a virus?
- 2013, Graham McPhee video summary of NIH ME/CFS funding - 5: Money and ME (Graham McPhee)
- 2016, RFA Ticker, 7/11/16
- 2016, NIH Charting Its Course for ME/CFS
- 2016, NIH Pledges Long Term Effort on Chronic Fatigue
See also[edit | edit source]
- Centers for Disease Control
- National Institute of Allergy and Infectious Diseases
- Trans-NIH ME/CFS Working Group
References[edit | edit source]
- "NIH Director's Blog". NIH Director's Blog. Retrieved Jan 7, 2019.
- "Organization". National Institutes of Health (NIH). Oct 31, 2014. Retrieved Jan 7, 2019.
- "Trans-NIH ME/CFS Working Group Members". National Institutes of Health (NIH). Jan 6, 2016. Retrieved Jan 7, 2019.
- "NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". National Institutes of Health (NIH). Oct 29, 2015. Retrieved Jan 7, 2019.
- Spotila, Jennie. "The NIH Plan". Occupy M.E. Retrieved Jan 7, 2019.
- Francis Collins of NIH on Charlie Rose- Chronic Fatigue Syndrome ME/CFS Myalgic Encephalomyelitis
- "NIH aiming to commit RFA funds to ME/CFS research". #MEAction. Mar 10, 2016. Retrieved Jan 7, 2019.
- "NOT-AI-16-046: Notice of Availability of Administrative Supplements on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". grants.nih.gov. Retrieved Jan 7, 2019.
- "NOT-NS-16-024: Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". grants.nih.gov. Retrieved Jan 7, 2019.
- "RFA-NS-17-022: Data Management and Coordinating Center (DMCC) for the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRC) (U24)". grants.nih.gov. Retrieved Jan 7, 2019.
- "RFA-NS-17-021: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRCs) (U54)". grants.nih.gov. Retrieved Jan 7, 2019.
- Bateman Horne Center - Jun 20, 2018
- "National Institutes of Health (NIH) — All of Us". allofus.nih.gov. Retrieved Jan 7, 2019.
- RFA Ticker
- Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)
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.