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
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.
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