Vote: USAWG requests to NINDS director

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
 

Facebook
Twitter
WhatsApp
Email

Latest News

white rectangle with red splashes of tiny red dots in all four corners. #MEAction logo at the top. #MEAction Minnesota Helps Save Long Covid Program in red font.

Minnesota’s Long COVID Funding Saved from Elimination

We have good news! The first-in-the-nation Long COVID program run by the Minnesota Department of Health (MDH) has been saved from elimination! This means #MEAction will be able to continue its work helping Minnesotans with ME/CFS, Long COVID and related conditions access vital home and community-based support services, as part of our multi-year grant.   Last

Read More »

Millions Missing Scotland 2025 raises a red alert

On Wednesday 14th May 2025, #MEAction Scotland held Millions Missing Scotland outside the Scottish Parliament in Edinburgh. The rally sent a clear and urgent message to the Scottish Government to act on the £4.5 million pledged in the 2025-26 budget for specialist support for ME, Long Covid, and other similar conditions. This year’s theme, ‘Red

Read More »

Research Roadmap Petition

We reached 7,000 signatures on our last letter. This time, our goal is 10,000. Please sign the letter today and share it with your friends and family.

Read More »
Scroll to Top