Action for ME has joined S4ME

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

 

"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