US Action Working Group
The US Action Working Group (USAWG) is a group of American organizations and activists.
The group was formed by members who met in person in Washington at the August 2015 CFSAC meeting. They announced their formation on December 22, 2015.[1]
History
Actions
Letters
- Letter to NIH and US Secretary of Health Sylvia Burwell (September 2015)[2]
- Letter calling on HHS to investigate the PACE trial (November 2015)[3]
- Letter thanking the NIH for the November announcement re: revamping their research program (November 2015)[4]
- Letter to NINDS on patient participation and the research program (February 2016)[5]
Congressional outreach
Rules & Organization
Group decisions are non-binding. Members and individuals choose whether to opt-in to group actions on a case by case basis.[citation needed] Not all members opt in. For example, #MEAction elected not to sign on to the November 2015 thank you letter to the National Institutes of Health after only 74.5% of its members voted to support that action.[6]
Current members
Patient Organizations
Bateman Horne Center, Inc.
Connecticut CFIDS Association, Inc.
ImmuneDysfunction.org dba The Vermont CFIDS Association, Inc
Massachusetts CFIDS/ME & FM Association
The Myalgic Encephalomyelitis Action Network (#MEAction)
Open Medicine Foundation (OMF)
New Jersey ME/CFS Association, Inc.
PANDORA Org
Wisconsin ME and CFS Association, Inc.
Patient blogs
Onward Through the Fog (Erica Verrillo)
Race to Solve ME/CFS (Claudia Goodell)
Speak Up About ME (Denise Lopez-Majano)
Independent Advocates
Lily Chu. MD, MSHS
Criticism
Learn more
See also
References
- ↑ Over twenty US organizations and advocates announce new working group
- ↑ POLL: SHOULD #MEACTION SIGN THIS NIH LETTER?, #MEAction
- ↑ LETTER: ASK HHS TO INVESTIGATE PACE, #MEAction
- ↑ LETTER TO THANK NIH FOR ANNOUNCEMENT, #MEAction
- ↑ VOTE: USAWG REQUESTS TO NINDS DIRECTOR
- ↑ LETTER TO THANK NIH FOR ANNOUNCEMENT, #MEAction