Trial By Error: Action For ME’s Employment Advice
23 JANUARY 2019
By David Tuller, DrPH
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.
Action For ME’s current leadership has, thankfully, taken some major steps to repair its often-tense relationship with many in the patient community. The organization has distanced itself from Professor Esther Crawley—a good move given that her work is rife with ethical and methodological flaws. It has acknowledged
the problematic nature of its involvement in PACE, and has updated the information about the illness on its site to better conform to reality. While these actions were welcome, they should have happened years earlier.
The organization also signed
last summer’s open letter to The Lancet—a first. Some advised me to refuse to let Action For ME add its name, given the history. That was an interesting and provocative proposition. But I felt that the group’s public endorsement of the letter’s argument outweighed the political point that would be made by excluding it.
