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
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 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.
- Responses on the most compelling ME/CFS research needs (pdf, 542 kb)
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.
- Responses on strategies for overcoming scientific challenges or barriers to progress in ME/CFS research. (pdf, 519 kb)
- Responses on 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. (pdf, 373 kb)
- Responses on relevant considerations and strategies for clinical ME/CFS research, including the development and validation of data standards and outcome measures (pdf, 320 kb)
- Responses on overcoming challenges or barriers to establishing a career in ME/CFS research for early career investigators and those new to the field (pdf, 361 kb)
- Responses on approaches to strengthen research and career training for ME/CFS investigators. (pdf, 278 kb)
- Responses on 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. (pdf, 364 kb)
- Responses on 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. (pdf, 402 kb)
- Responses on strategies for increasing ME/CFS research collaboration and communication between relevant stakeholders. (pdf, 281 kb)
- Responses on other approaches that may improve the overall field of ME/CFS research. (pdf, 342 kb)