AIDS activist Terri Wilder has ME, and says we’re repeating history — ignoring people at the center of the ME/CFS public health crisis.
“While I have only been diagnosed with ME for ten weeks, I can tell you that it didn’t take me very long to figure out that we are repeating history with ME. I have told multiple people that I’m having déjà vu. You see, I have been working in HIV since 1989.
“One of the reasons ACT UP was founded was because health officials, government researchers, medical bureaucrats, medical providers and pharmaceutical company executives believed they were the “AIDS experts” when in fact the experts were the people living with AIDS.
“The persons with AIDS points-of-view were made invisible and their real-world knowledge about the changes that needed to be made to end the crisis, was ignored.”
— Terri Wilder, AIDS activist, member of ACT UP/NY, and person living with Myalgic Encephalomyelitis (ME); CFSAC Comments, Terri Wilder