ME Action Scores Win with ME/CFS Congressional Letter


Founder of Health Rising and Phoenix Rising
Staff member
ME Action got 55 Congressman and women to sign onto a letter to Director Francis Collins asking the NIH to strongly consider the input received from advocates and patients from the information request from the NIH, and to update Congress on what its doing to increase research funding on ME/CFS.

This must have been the largest number of congress people ever to sign a letter to the NIH concerning ME/CFS. That many signers probably reflected the fact that the letter did not directly ask for money. (Some congressional reps are leery about telling the NIH how to spend its money.) Besides putting the NIH on notice that Congress is watching, the letter provided a great to educate Congressmen and women about ME/CFS.

The letter, spearheaded by Rep. Zoe Lofgren (D-CA) and Rep. Anna G. Eshoo (D-CA), has been signed by 55 members of Congress and urges the Trans-NIH ME/CFS Working Group to consider in a timely manner the input received through its recent Request for Information (RFI) regarding emerging needs, opportunities, and strategies for ME/CFS research and research training. The letter also asks that the Trans-NIH ME/CFS Working Group update Congress with the current status of its planning efforts through 2018.


Well-Known Member
@Cort I got an email in the last week showing a photo of a response letter from Francis Collins to ???? I cannot remember who the letter was written to, but in was in response to this. Did anyone else get it? Can you post a copy. I want to have it to send to my representative.

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