Vote: USAWG requests to NINDS director

Categories: All News

The US Action Working Group (USAWG) is submitting a letter to NINDS director Walter Koroshetz detailing a list of requests relating to patient participation, extramural funding and the intramural research agenda.

You can read that list of requests here.

All USAWG actions are opt-in. We would like to poll active #MEAction members who are American citizens or residents to determine whether #MEAction should sign onto this letter. #MEAction will sign the letter if at least 80% of voters agree. DEADLINE: Tuesday, March 1st

Should #MEAction sign this proposed lists of requests?


Current signatories include: 

Courtney and Robert Miller

Solve ME/CFS Initiative, Los Angeles, CA, national association

Health Rising, online patient community

Massachusetts CFIDS/ME & FM Association

Open Medicine Foundation, Agoura Hills, CA

Pandora Org, Inc., Traverse City, Michigan

ProHealth, online patient community

Simmaron Research, Incline Village, NV

Wisconsin ME and CFS Association, Inc.

Mary Dimmock

Claudia Goodell, Race to Solve ME/CFS, online network

Billie Moore, New Jersey ME/CFS Association Advocacy Chair

Jennifer Spotila, JD

Denise Lopez-Majano, Speak Up About ME

Lily Chu, MD, MSHS – Independent Consultant – San Francisco, CA

Donna Pearson, Patient Advocate

Gail Cooper, Oakland, CA

Sonya Heller Irey, MPIA


Categories: All News

Support our work!

Did you find this content useful?
Help us keep going and keep growing. Make a recurring donation today.

Most people don't take the time to donate but if every visitor pledged just $2 per month on a recurring basis, we could fully fund #MEAction.

Tags: ,

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.