That I died of red tape
“An AIDS activist and member of ACT UP/NY who has been newly diagnosed with ME has criticized US government health bodies for repeating AIDS history by ‘doing nothing’ for millions of ME patients.”
Terri Wilder, from New York, provided testimony at the CFS Advisory Committee (CFSAC) meeting on 18 May.
Terri stated that her testimony was inspired by famous AIDS speeches, congressional testimony given by people with HIV/AIDS, her own experiences as an AIDS activist, and ME activist that she has met in the past few weeks. “Since my official diagnosis, I’ve been trying to wrap my head around living with ME: what does it mean to me as a human being, how does it shape and shift my identity?” she said. “My view of the world has changed within the past ten weeks. [When] there was this opportunity to give testimony, I started having these really rapid images flashing towards me of Vito Russo’s famous “Why We Fight” speech… and the testimony given by Roger Lyon in 1983 before a congressional hearing in which he said “I came here today in the hope that my epitaph would not read that I died of red tape.” I can’t ignore the similarities between M.E. and what happened to my friends with HIV in the early years of the AIDS epidemic.
— an article by Alex Anderssen, AIDS activist with ME speaks at CFSAC (Dec 2016)