National Institutes of Health

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. Francis Collins, MD, PhD, currently serves as NIH director. The NIH campus is in Bethesda, Maryland, US.

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

Officials

 * Francis Collins - Director of NIH since 2009
 * Walter Koroshetz - Director of the National Institute of Neurological Disorders and Stroke, Chair Trans-NIH ME/CFS Working Group)
 * Vicky Whittemore (ME/CFS Working Group)

Other notable staff

 * Avindra Nath
 * Brian Walitt

Notable announcements related to ME/CFS research

 * Oct 2015, the NIH announced its intention to bolster its 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
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
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.

ME/CFS awareness

 * 2017, May 12 is ME/CFS and Fibromyalgia International Awareness Day

Online presence

 * Facebook
 * Twitter
 * Instagram
 * YouTube
 * Flickr
 * Website
 * NIH Director's blog
 * NIH social media

Learn more

 * 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

Learn more

 * Notice of Availability of Administrative Supplements on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)