National Institutes of Health
The National Institutes of Health (NIH) is the primary United States government body responsible for biomedical and health research whose campus is in Bethesda, Maryland, USA. Francis Collins, MD, PhD, currently serves as director.
- January 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.
- 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.
- April 2016, the NIH announced it would provide funding for existing grant holders to expand their studies to include ME/CFS patients.
- March 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.
- October 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.
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:
- 2016, 2015 NIH Spending on ME/CFS Studies
- 2016, NIH: Who Reviewed Grants in 2015
- 2015, 2014 NIH Spending on ME/CFS Studies
- 2014, 2013 NIH Spending on CFS Studies
- 2013, 2012 NIH Spending on CFS Studies
- 2012, 2011 NIH Spending on 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.
- 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
- Wikipedia - National Institutes of Health
- 2016, RFA Ticker, 7/11/16
- 2016, NIH Charting Its Course for ME/CFS
- 2016, NIH Pledges Long Term Effort on Chronic Fatigue
- 2013, Graham McPhee video summary of NIH ME/CFS funding - 5: Money and ME (Graham McPhee)
- 2011, Demystifying Medicine - Chronic Fatigue Syndrome: Is there a virus?
- RFI Notice Number: NOT-NS-16-024 https://grants.nih.gov/grants/guide/notice-files/NOT-NS-16-024.html
- NIH aiming to commit RFA funds to ME/CFS research
- NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
- Director of NINDS writes to ME/CFS Patient about Commitment to Research, Acknowledgement of Serious Disease
- The NIH Plan
- Francis Collins of NIH on Charlie Rose- Chronic Fatigue Syndrome ME/CFS Myalgic Encephalomyelitis
- RFA Ticker
- Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)