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:

identifying gaps and opportunities in ME/CFS research, considering unique opportunities for NIH-supported ME/CFS research to attract and train a pipeline of new and young investigators, and 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.