Andy
Retired committee member
http://www.virology.ws/2019/01/23/trial-by-error-action-for-mes-employment-advice/Action For ME is the largest charity for this disease in the UK. It is also the charity responsible for enabling the PACE trial through its unfortunate decision to work with the investigators to develop “adaptive pacing therapy.” This was a terrible idea from the start, for multiple reasons.
First, the PACE investigators had already demonstrated their true colors with their sub-par research and unwarranted claims going back at least a decade. Moreover, it should have been obvious to any reasonably intelligent researcher that the PACE operationalization of “pacing” transformed this intervention into something other than the self-help strategy that patients use. PACE did not investigate “pacing.” It only investigated APT—a very different animal that required patients to create diaries and schedules of activities and on and on. Yet the PACE results have routinely been used to claim that “pacing” doesn’t work. This is nonsense–and Action For ME bears much of the blame.
Also includes @Trish 's letter to AfME about the "Toolkit for professionals".