US Action Working Group: Difference between revisions
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*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 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 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>{{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 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> | *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> | ||
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==Rules & Organization== | ==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 | 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== | ==Current members== | ||
Revision as of 20:09, December 4, 2019
The US Action Working Group (USAWG) is a informal group of American ME/CFS organizations and activists who communicate and collaborate with one another.[1][2]
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[edit | edit source]
Actions[edit | edit source]
Letters[edit | edit source]
- Letter to NIH and US Secretary of Health Sylvia Burwell (September 2015)[3]
- Letter calling on HHS to investigate the PACE trial (November 2015)[4]
- Letter thanking the NIH for the November announcement re: revamping their research program (November 2015)[5]
- Letter to NINDS on patient participation and the research program (February 2016)[6]
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.[1] 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.[5]
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.
PANDORA Org
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.
