From Ben HsuBorger at #MEAction:
"Why I Joined a Stand Up for Science Rally"
https://www.meaction.net/2025/03/12/why-i-joined-a-stand-up-for-science-rally/
"I have lived as an ME/CFS 'spoonie' for the past 20 years after I got a virus and never recovered. I’ve spent much of the past 10 years of my career advocating for ME/CFS research at the NIH"
"I don’t want to see the same scientific harms that have happened in the ME community become even more widespread across all of science"
For examples of scientific harm done to ME/CFS patients see this video by @brokenbattery
It lists many issues, including the CDC renaming the illness in 1988 and the PACE trial, a flawed research study that has not yet been retracted:
https://www.youtube.com/watch?v=RiwX9Y0NbiQ
"George Monbiot describes the treatment of Myalgic Encephalomyelitis as 'the greatest medical scandal of the 21st century' …'"
Transcript:
https://medium.com/@abrokenbattery/me-cfs-scandal-explainer-eb4c1bfb7464#0cda