The ME/CFS Research Roadmap will be informed by feedback from the broader ME/CFS community, including scientists and people with lived experience. We encourage anyone invested in or impacted by ME/CFS to attend the public webinars and share their questions, comments, and ideas about ME/CFS research.

You can visit the NANDSC ME/CFS Research Roadmap Working Group webpage to learn about the overall process.

How can I share feedback?

There will be multiple opportunities for input throughout the process. You can attend the webinars, during which there will be opportunities for public comment and/or Q&A sessions. You can also use the crowdsourcing tool IdeaScale to contribute additional ideas and recommendations after each webinar. Details about IdeaScale are forthcoming. You can also provide comments at any time by sending an email to

Information on upcoming feedback opportunities will be posted on the website and shared via the NIH ME/CFS listserv. Sign up for listserv updates here.

Why do we want and need your insight and how will we use the information?

Your feedback is important because it may help shape recommendations for research on ME/CFS. A National Advisory Neurological Disorders and Stroke (NANDS) Council working group comprised of scientists, clinicians, leaders of non-profit advocacy and research organizations, and people with lived experience have been working together to identify research priorities for ME/CFS.

Comments from the broader ME/CFS community will help the working group identify the most critical areas for inclusion in a research roadmap. The goal is to include priorities that are most appropriate and beneficial for those impacted by ME/CFS, while also moving the field closer to translational studies and clinical trials.