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. ME patient-advocate Terri Wilder was an activist with ACT UP in New York before her ME diagnosis in 2016. 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.
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- 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'.
- "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.
- Ford, Olivia G. (May 9, 2018). "Using Lessons From HIV Activism, People With 'Chronic Fatigue Syndrome' Fight for the #MillionsMissing". TheBody.com. Retrieved April 20, 2019.
- 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
- "Honoring David Tuller for ME/CFS Reporting". Open Medicine Foundation. December 28, 2016. Retrieved April 20, 2019.