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US Action Working Group
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The '''US Action Working Group''' (USAWG) is a informal group of American ME/CFS organizations and activists who communicate and collaborate with one another.<ref name=":0" /><ref>{{Cite web|url=https://usawg.wordpress.com/ | title = US Action Working Group|website=US Action Working Group|language=en|access-date=2019-12-04}}</ref> 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.<ref name=":0">{{Cite web|url=https://www.meaction.net/2015/12/22/us-orgs-and-advocates-announce-new-working-group/ | title = Over twenty US organizations and advocates announce new working group | date = 2015-12-22 | website = #MEAction|language=en-US|access-date=2019-12-04}}</ref> ==History== ==Actions== ===Letters=== *Letter to [[NIH]] and US [[Secretary of Health]] Sylvia Burwell (September 2015)<ref>{{Cite web|url=https://www.meaction.net/2015/09/26/poll-nih-letter/ | title = Poll: Should #MEAction sign this NIH Letter? | date = 2015-09-26 | website = #MEAction|language=en-US|access-date=2019-12-04}}</ref> *Letter calling on [[HHS]] to investigate the [[PACE trial]] (November 2015)<ref>{{Cite web|url=https://www.meaction.net/2015/11/06/letter-call-for-hhs-to-investigate-pace/ | title = Letter: Ask HHS to Investigate PACE | date = 2015-11-06 | website = #MEAction|language=en-US|access-date=2019-12-04}}</ref> *Letter thanking the [[NIH]] for the November announcement re: revamping their research program (November 2015)<ref name=":1">{{Cite web|url=https://www.meaction.net/2015/11/17/poll-letter-to-thank-nih-for-announcement/ | title = Poll: Letter to thank NIH for Announcement | date = 2015-11-17 | website = #MEAction|language=en-US|access-date=2019-12-04}}</ref> *Letter to [[NINDS]] on patient participation and the research program (February 2016)<ref>{{Cite web|url=https://www.meaction.net/2016/02/29/vote-usawg-requests-to-ninds-director/ | title = Vote: USAWG requests to NINDS director | date = 2016-02-29 | website = #MEAction|language=en-US|access-date=2019-12-04}}</ref> ===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.<ref name=":0" /> 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.<ref name=":1" /> ==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 [[Phoenix Rising]] [[Simmaron Research]] [[Solve ME/CFS Initiative]] [[Wisconsin ME and CFS Association]], Inc. ===Patient blogs=== [[Health Rising]] ([[Cort Johnson]]) [[OccupyCFS]] ([[Jennie Spotila]]) [[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 [[Mary Dimmock]] [[Robert Miller|Robert]] and [[Courtney Miller]] [[Donna Pearson]] ==Criticism== == See also == ==Learn more== * [https://usawg.wordpress.com/ US Action Working Group website] == References == {{Reflist}} [[Category: Organizations]] [[Category:Organizations based in the United States]]
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