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.

Letters

 * 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)

Rules & Organization
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.

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 and Courtney Miller

Donna Pearson

Learn more

 * US Action Working Group website