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

ACT UP, an acronym for AIDS Coalition to Unleash Power, is an international direct action advocacy group dedicated to ending AIDS. Its role in the transformation of HIV/AIDS research and treatment is often cited as a potential advocacy model for ME/CFS.[1][2] ME patient-advocate Terri Wilder was an activist with ACT UP in New York before her ME diagnosis in 2016.[3] Journalist and public health expert David Tuller, DPH, also has a background as an ACT UP activist, including being among those arrested at the first Wall Street ACT UP action in 1987.[4][5]

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  1. Maxmen, Amy (January 3, 2018). "A reboot for chronic fatigue syndrome research". Nature. 553: 14. doi:10.1038/d41586-017-08965-0. In one column from 1998, the co-founder of an ME/CFS organization reports on a conference on the ailment in Boston. She notes that someone from ACT UP, a group known for driving research on HIV, was in attendance, 'and may show us how to get more attention for the disease'.
  2. "Dr Nath on ACT UP and patient involvement in ME/CFS research". #MEAction. February 17, 2016. Retrieved April 20, 2019. [Y]ou know I [Dr. Avindra Nath] grew up in the early AIDS epidemic –and I saw interaction with ACT UP and other patient forums whereby they had a great impact on the way disease was handled – treated – and moved the federal government to make changes at every level.
  3. Ford, Olivia G. (May 9, 2018). "Using Lessons From HIV Activism, People With 'Chronic Fatigue Syndrome' Fight for the #MillionsMissing". Retrieved April 20, 2019.
  4. Petrelis, Michael (May 21, 2013). "Jay Blotcher's ACT UP & Friends Reunion in San Francisco". Petrelis Files. Retrieved April 20, 2019. [O]ur friend David Tuller. Back in 1987 at ACT UP's first demonstration on Wall Street, he was among the arrestees...the Wall Street 17
  5. "Honoring David Tuller for ME/CFS Reporting". Open Medicine Foundation. December 28, 2016. Retrieved April 20, 2019.