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

Notice Number: NOT-NS-19-045

Key Dates
Release Date: March 15, 2019
Response Date: April 15, 2019

Related Announcements
None

Issued by
National Institute of Neurological Disorders and Stroke (NINDS)

Purpose

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) 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.

Optional: Please indicate if you are a researcher, health care provider, individual with ME/CFS, patient advocate, or other interested party. If you are submitting a response on behalf of an organization or membership as a whole, please indicate the name of your organization.

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

  • The most compelling ME/CFS research needs.
  • Strategies for overcoming scientific challenges or barriers to progress in ME/CFS research.
  • Potential research resources, tools, and/or materials that could help advance ME/CFS research or enable early career investigators and senior investigators new to the ME/CFS field to more easily conduct research.
  • Relevant considerations and strategies for clinical ME/CFS research, including the development and validation of data standards and outcome measures.
  • Overcoming challenges or barriers to establishing a career in ME/CFS research for early career investigators and those new to the field.
  • Approaches to strengthen research and career training for ME/CFS investigators.
  • Identifying related scientific areas that may be relevant to ME/CFS and strategies for establishing collaborations with experts in those areas to help advance ME/CFS research.
  • Approaches to reduce barriers that prevent individuals with ME/CFS from participating in research. For example, these might be logistical challenges, such as difficulty traveling to a study site, or might be because of an unwillingness to undergo certain types of research protocols.
  • Strategies for increasing ME/CFS research collaboration and communication between relevant stakeholders.
  • Other approaches that may improve the overall field of ME/CFS research.
 

How to Submit a Response

Responses to this RFI must be submitted electronically using the web-based form at https://www.ninds.nih.gov/RFI-NANDS-ME-CFS

Responses will be accepted through April 15 , 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.

Inquiries

Please direct all inquiries to:

Andrew Breeden, PhD
National Institute of Neurological Disorders and Stroke (NINDS)
Telephone: 301-496-1917
Email: andrew.breeden@nih.gov 

Vicky Whittemore, PhD
National Institute of Neurological Disorders and Stroke (NINDS)
Telephone: 301-496-1917
Email: vicky.whittemore@nih.gov