NANDSC ME/CFS Research Roadmap Working Group

In 2019, the National Advisory Neurological Disorders and Stroke (NANDS) Council Working Group for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) presented the Report of the NANDS Council Working Group for ME/CFS Research(pdf, 669 KB). In 2022, as part of the strategic planning process outlined in the report, NINDS announced the development of a Research Roadmap for ME/CFS, which will identify research priorities to move the field toward translational studies and clinical trials.

The roadmap will be informed by a Working Group, which will include ME/CFS basic and clinical experts from the research community, leaders of ME/CFS non-profit advocacy and research organizations, as well as people who are living with ME/CFS, have a family history of ME/CFS, are caregivers/care partners of people living with ME/CFS, and/or identify as ME/CFS patient advocates.

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Interested in participating?
The NIH is seeking self-nominations of persons living with ME/CFS, individuals with a family history of ME/CFS, caregivers/care partners for persons with ME/CFS, or ME/CFS patient advocates to serve on the working group. Learn about how to apply below!

Working Group Application Information

This Working Group will meet regularly in 2023 to discuss and develop a Research Roadmap for ME/CFS. Members of the Trans-NIH ME/CFS Working Group will coordinate the activities of the ME/CFS Research Roadmap Working Group together with staff from the NINDS Office of Science Policy and Planning and the NINDS Office of Neuroscience Communications and Engagement.

Self-nominations from individuals from historically under-represented groups are encouraged. See eligibility requirements and application information below.

Eligibility

  • Experience with ME/CFS (e.g., a person living with ME/CFS, a person with a family history of ME/CFS, a family member or a caregiver/care partner of a person with ME/CFS, or a patient advocate).
  • Have some knowledge of current research on ME/CFS.
  • Available and able to participate in up to seven or eight four-hour virtual workshops (videoconference or phone) over the next 10-12 months. These workshops will include frequent breaks. In addition, applicants can request accommodations in the application form.  
  • Have a reasonable command of the English language.
  • Able to clearly and succinctly articulate your views through oral and written communications (use of proxy permitted).
  • Have a reasonable level of comfort with email and in navigating the internet (downloading and uploading files, filling forms, etc.), with assistance, if needed.
  • Over the age of 18.
  • Willing to have your name publicly posted on the roster for the ME/CFS Research Roadmap Working Group.

Details of Role
Self-nominees invited to serve on the Working Group will be full-voting members and will be expected to follow all guidelines put forward for the group. During Working Group meetings, all members will be expected to participate in discussions and share their opinions and perspectives. Self-nominees should be comfortable expressing their individual views on a panel that includes clinician-scientists, researchers, and subject matter experts.

Selection Process
NIH staff will review the self-nominations and make selections based on nominees’ connection to ME/CFS research, stated interest and ability to participate in the Working Group’s efforts, and to ensure a diversity of backgrounds and perspectives. NINDS staff may contact short-listed nominees in February 2023 by email, phone, or videoconference for final selection before an invitation is sent to participate in the Working Group. Self-nominees who are not selected for the Working Group will have the option to indicate if they wish to be contacted for future possible engagement opportunities.

To Apply

  1. Complete the Self-Nomination for ME/CFS Research Roadmap Working Group formand
  2. Email a resume (in Microsoft Word format) to MECFSResearchRoadmap@ninds.nih.gov with the email subject line: Self-Nomination for ME/CFS RRWG – [YOUR FULL NAME]

The application deadline is February 9, 2023 by 5:00 PM ET.

Resources and Tools

Contacts

NINDS ME/CFS Research Roadmap
MECFSResearchRoadmap@ninds.nih.gov

 

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