NIH Request for Information on ME/CFS Research Efforts

On May 24, 2016, the Trans-NIH ME/CFS Working Group published a Request for Information seeking the public’s input on needs, opportunities and strategies for ME/CFS research and research training. Comments were invited from researchers, health care providers, patient advocates and health advocacy organizations, scientific or professional organizations, Federal agencies and other parties with an interest in advancing ME/CFS research efforts.

In particular, the Working Group sought perspective on the following issues related to ME/CFS research planning efforts:

• Emerging needs and opportunities that should be considered as new ME/CFS research strategies are developed
• Challenges or barriers to progress in research on ME/CFS
• Gaps and opportunities across the research continuum from basic through clinical studies

This request was for information and planning purposes only. Responses were accepted through June 24, 2016. Follow the links below to read the comments. In all instances, emails and personally identifiable information have been removed. Names of healthcare providers, researchers and representatives from patient organizations remain.

Related Links

RFI responses from individuals

RFI responses from patient advocacy organizations

RFI responses from researchers and healthcare providers

Note: The above summary documents are PDF conversions of comments submitted by the public in response to the RFI. As a result, some sections may not be fully 508 compliant. NIH is working on a solution to ensure that the full document meets Section 508 standards. If you experience accessibility issues while reviewing the above documents please contact Dana Schloesser.