Responses to Request for Information: Soliciting Input on How Best to Advance Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Research in the National Institute of Neurological Disorders and Stroke blog, USA, 20 Aug 2019

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 issued a Request for Information (RFI) (NOT-NS-19-045) to gather input on approaches and strategies and help inform discussions of how to advance research on ME/CFS. The RFI was open for responses from March 15th, 2019 until May 1st, 2019. Follow the links below to read responses to each area of the RFI.

Personally identifiable information within the responses has been redacted, as indicated by […]. Names of healthcare providers, researchers and representatives from patient organizations remain. Please note that some responses include links to outside websites. The NINDS cannot attest to the accuracy of the content on a non-federal site. Linking to a non-federal site does not constitute an endorsement of that site by the NINDS or NIH.

RFI Responses:

e.g.  To be biomedical – and based on appropriate data sets clearly identifying people with the illness and its severity. Not spin off from other conditions. It needs to focus on the lack of energy, inflammation and PEM as the key defining features of ME.

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