NIH Deadlines

In the next two weeks, there are three important opportunities for the ME community to engage with NIH.

April 4th and 5th: NIH is hosting the Accelerating Research on ME/CFS Meeting. Take a look at the agenda and invited speakers. The organizing committee of this meeting is comprised mainly of ME scientists and advocates, and as far as I can recall this is the largest ever ME community representation on an NIH meeting committee. You can watch the meeting online, and the link should be posted to the meeting information page.

April 9th, 2pm (Eastern time): NIH will host another advocacy call. To participate, call 866-844-9416, and use passcode: 7178985. No agenda has been posted, and it comes right on the heels of the research meeting.

April 15, 2019 Deadline EXTENDED to May 1, 2019: The National Advisory Neurological Disorders and Stroke (NANDS) Council Working Group for ME/CFS has issued a Request for Information to inform its work. The Working Group has asked for input on ten questions. You can view the questions and respond on this webpage, but note the deadline of April 15th! You have two weeks for your response.

There is one odd thing about this Request for Information. Some readers will recall that NIH issued a similar RFI in 2016. NIH received over 460 pages of responses, which you can still read online. There is substantial overlap in the questions from 2016 and this year. Hopefully the answers will add enough new information to be worth our time in responding and the Working Group’s time in reading.


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