National Institutes of Health

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
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The National Institutes of Health or NIH is the primary United States government body responsible for biomedical and health research, it is the medical research agency for the United States, and is a department of Health and Human Services.[1] Francis Collins, MD, PhD, currently serves as NIH director.[2] The NIH campus is in Bethesda, Maryland, US.

The National Institutes of Health is made up of 27 different components called Institutes and Centers,[3] of which many are participating in the Trans-NIH ME/CFS Working Group.[4]

Notable staff[edit | edit source]

Officials[edit | edit source]

Other notable staff[edit | edit source]

Notable announcements related to ME/CFS research[edit | edit source]

  • Oct 2015, the NIH announced its intention to bolster its funding for the disease, following the Institute of Medicine report.[5][6] 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.[7] 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.[8]
  • Apr 2016, the NIH announced it would provide funding for existing grant holders to expand their studies to include ME/CFS patients.[9]
  • 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.[10]
  • 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).[11] The goal of the CRC is to perform collaborative research on ME/CFS to inform the etiology, pathogenesis and/or treatment of ME/CFS.[12]
  • 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.[13][14]
  • 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:

Jennie also tracks NIH RFAs (Requests for Applications) which are invitations from the NIH for researchers to submit applications for funding in specific areas.[15] 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.[16]

ME/CFS awareness[edit | edit source]

Online presence[edit | edit source]

Learn more[edit | edit source]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. "Who We Are". National Institutes of Health (NIH). Retrieved February 4, 2021.
  2. "NIH Director's Blog". NIH Director's Blog. Retrieved January 7, 2019.
  3. "Organization". National Institutes of Health (NIH). October 31, 2014. Retrieved January 7, 2019.
  4. "Trans-NIH ME/CFS Working Group Members". National Institutes of Health (NIH). January 6, 2016. Retrieved January 7, 2019.
  5. "NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". National Institutes of Health (NIH). October 29, 2015. Retrieved January 7, 2019.
  6. Spotila, Jennie. "The NIH Plan". Occupy M.E. Retrieved January 7, 2019.
  7. Francis Collins of NIH on Charlie Rose- Chronic Fatigue Syndrome ME/CFS Myalgic Encephalomyelitis
  8. "NIH aiming to commit RFA funds to ME/CFS research". #MEAction. March 10, 2016. Retrieved January 7, 2019.
  9. "NOT-AI-16-046: Notice of Availability of Administrative Supplements on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". grants.nih.gov. Retrieved January 7, 2019.
  10. "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 January 7, 2019.
  11. "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 January 7, 2019.
  12. "RFA-NS-17-021: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRCs) (U54)". grants.nih.gov. Retrieved January 7, 2019.
  13. Bateman Horne Center - Jun 20, 2018
  14. "National Institutes of Health (NIH) — All of Us". allofus.nih.gov. Retrieved January 7, 2019.
  15. RFA Ticker
  16. Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)