Request for Information: Soliciting Input on How Best to Advance Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Research

Request for Information: Soliciting Input on How Best to Advance Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Research


In 2018 the National Institute of Neurological Disorders and Stroke (NINDS) formed a Working Group of the National Advisory Neurological Disorders and Stroke (NANDS) Council focused on how best to advance research on myalgic encephalomyelitis /chronic fatigue syndrome (ME/CFS). 

The Working Group, composed of scientists, clinicians, representatives from non-governmental organizations (NGOs), and individuals with ME/CFS, is charged with:

  1. identifying gaps and opportunities in ME/CFS research,
  2. considering unique opportunities for NIH-supported ME/CFS research to attract and train a pipeline of new and young investigators, and
  3. identifying potential approaches to enhance ongoing research collaboration and communication between NGOs, individuals with ME/CFS, researchers, and federal agencies that support research in ME/CFS.

The NANDS Council Working Group for ME/CFS is soliciting input on approaches and strategies to address the charge of the Working Group and will use the responses to this Request for Information (RFI) (NOT-NS-19-045) to help inform discussions of how to advance research on ME/CFS. 

Information Requested

NIH is soliciting input from all interested stakeholders, including 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. Organizations are strongly encouraged to submit a single response that reflects the views of their organization and membership as a whole.



Please provide your perspective on any or all of the following issues related to the Working Group's charge:

How to Submit a Response

Responses to this RFI must be submitted electronically using the web-based form.

Responses will be accepted through 05/01/2019.

Responses are voluntary and may be submitted anonymously.  Respondents are advised that the Government is under no obligation to acknowledge receipt of the information received or provide feedback to respondents with respect to any information submitted. Responses may be shared publicly on an NIH website. Please do not include any personally identifiable or other information that you do not wish to make public. No proprietary, classified, confidential, or sensitive information should be included in your response.

This request is for information and planning purposes only and should not be construed as a solicitation or as an obligation on the part of the United States Government. The NIH will not make any awards based on responses to this RFI or pay for the preparation of any information submitted or for the Government's use of such information.

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