Action for ME has joined S4ME

[Sly Saint]

Just reading a post-PACE study done by the PACE authors where they are trying to use the PACE data to create sub-sets. Interesting bit at the end:
"
The use of the broad and widely used Oxford criteria (Sharpe et al. 1991) and the inclusion of
Action for ME representatives on the trial management committee (with the resulting addition of the adaptive pacing therapy arm) may have aided recruitment of a representative patient cohort."

implying that the addition of APT (spun as pacing by AfME and [supposedly] a key treatment being tested) was only added to give validity to the trial in the eyes of patients/AfME members.

https://kclpure.kcl.ac.uk/ws/files/62088871/Williams_Heterogeneity_revision_Nov_2016_clean.pdf

 

[Sly Saint]

This was how Action for ME justified involvement in the PACE trial (taken from Interaction magazine 2004):
View attachment 2523

This is on the above page:
View attachment 2524

As I said before, it was sold as research on pacing as members understood it.
Action for ME (as far as I know) have never apologised for misleading its members or the ME community as a whole.

"A/ME have helped to design the APT manual and have
endorsed this version of pacing,"

https://web.archive.org/web/2004071...antpr.plus.com/THE PACE TRIAL IDENTIFIER .pdf