Adam pwme
Senior Member (Voting Rights)
Just adding this quick video I made as I remembered these accounts from participants
Just adding this quick video I made as I remembered these accounts from participants
seeSection 2: adding insult to injury to have named it the 'PACE' trial — sowing confusion, such that the interviewer and even the patient are calling GET "pacing".
I would go further. It wasn't bad science, it wasn't even non-science. It was anti-science.As my son just said "It wasn't even bad science, it wasn't science at all. Science is evidence based."
I was one of the subjects of this study. I was on the "Adaptive Pacing" pathway. My memory isn't great but i'm sure i was told not to speak to others with the condition. Maybe neccessary for the trial, but also meant i was isolated for a long time and suffered as a result.
https://bsky.app/profile/rbmdm.bsky.social/post/3lakeen34fk2o
It's probably possible to find me in the results as the walking test, both before and after i walked loads, as i was relatively fit, with my health up and down and so i rested up before appointments. It didn't take into account me falling asleep on the trains home or the days that followed.
https://bsky.app/profile/rbmdm.bsky.social/post/3lakei673bc2o