US Action Working Group

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history

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. 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.


Phoenix Rising

Simmaron Research

Solve ME/CFS Initiative

Wisconsin ME and CFS Association, Inc.

Patient blogs[edit | edit source]

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[edit | edit source]

Lily Chu. MD, MSHS

Mary Dimmock

Robert and Courtney Miller

Donna Pearson

Criticism[edit | edit source]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. 1.0 1.1 1.2 "Over twenty US organizations and advocates announce new working group". #MEAction. December 22, 2015. Retrieved December 4, 2019.
  2. "US Action Working Group". US Action Working Group. Retrieved December 4, 2019.
  3. "Poll: Should #MEAction sign this NIH Letter?". #MEAction. September 26, 2015. Retrieved December 4, 2019.
  4. "Letter: Ask HHS to Investigate PACE". #MEAction. November 6, 2015. Retrieved December 4, 2019.
  5. 5.0 5.1 "Poll: Letter to thank NIH for Announcement". #MEAction. November 17, 2015. Retrieved December 4, 2019.
  6. "Vote: USAWG requests to NINDS director". #MEAction. February 29, 2016. Retrieved December 4, 2019.