The story so far

NINDS, the National Institute for Neurological Disorder and Stroke at the NIH has solicited an RFI, or a Request for Information, from the ME community on how to advance research for myalgic encephalomyelitis.  

With only a few weeks’ turn-around, the #MEAction NIH working group produced a compelling response based on information conveyed in dozens of patient-led efforts over ME advocacy’s history.

Then, we posted our drafted response and solicited input from the community at large.

What now?

The #MEAction NIH Working Group worked swiftly to incorporate this community feedback into our draft and sent the finalized RFI response to the NIH under the deadline.  You can read that finalized version here:

What’s next?

NANDS (National Advisory Neurological Disorders and Stroke) will read the RFI responses. There will be many more meetings, both whole group and subgroups. Each subgroup will analyze the RFI input and refine the report recommendations accordingly. A finalized report will go to NANDS in early September and this will be used to inform recommendations to advance ME research at NINDS.

We’ve waited a year to hear their plan for ME. We expect to hear that it will be sensible, robust, and have concrete endpoints and goals in order to determine success.

Our job is to continue to push for our community’s hard work so far to bear fruit. Search for NIH, NANDS, and NINDS tags on #MEAction for updates and further news on this front.