US Action Working Group
The US Action Working Group (USAWG) is a informal group of American ME/CFS organizations and activists who communicate and collaborate with one another.
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.
History[edit | edit source]
Actions[edit | edit source]
Letters[edit | edit source]
- Letter to NIH and US Secretary of Health Sylvia Burwell (September 2015)
- Letter calling on HHS to investigate the PACE trial (November 2015)
- Letter thanking the NIH for the November announcement re: revamping their research program (November 2015)
- Letter to NINDS on patient participation and the research program (February 2016)
Congressional outreach[edit | edit source]
Rules & Organization[edit | edit source]
Group decisions are non-binding. Members and individuals choose whether to opt-in to group actions on a case by case basis. 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.
Current members[edit | edit source]
Patient Organizations[edit | edit source]
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.
Wisconsin ME and CFS Association, Inc.
Patient blogs[edit | edit source]
Onward Through the Fog (Erica Verrillo)
Race to Solve ME/CFS (Claudia Goodell)
Speak Up About ME (Denise Lopez-Majano)
Independent Advocates[edit | edit source]
Lily Chu. MD, MSHS
Criticism[edit | edit source]
See also[edit | edit source]
Learn more[edit | edit source]
References[edit | edit source]
- ↑ 1.0 1.1 1.2 "Over twenty US organizations and advocates announce new working group". #MEAction. December 22, 2015. Retrieved December 4, 2019.
- ↑ "US Action Working Group". US Action Working Group. Retrieved December 4, 2019.
- ↑ "Poll: Should #MEAction sign this NIH Letter?". #MEAction. September 26, 2015. Retrieved December 4, 2019.
- ↑ "Letter: Ask HHS to Investigate PACE". #MEAction. November 6, 2015. Retrieved December 4, 2019.
- ↑ 5.0 5.1 "Poll: Letter to thank NIH for Announcement". #MEAction. November 17, 2015. Retrieved December 4, 2019.
- ↑ "Vote: USAWG requests to NINDS director". #MEAction. February 29, 2016. Retrieved December 4, 2019.
The information provided at this site is not intended to diagnose or treat any illness.
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