In 2011, amid many thoughtful avenues of research into a paralyzing syndrome that is as near to an off-switch on life as one can imagine, an $8 million dollar government-funded trial in the United Kingdom bulldozed a highway. The first results of PACE, the largest treatment trial ever conducted on ME/CFS— popularly, and unhelpfully, known as “Chronic Fatigue Syndrome”—announced a way out for, perhaps, a third of sufferers: As the British newspaper, The Independent, in a headline: “Got ME? Just get out and exercise, say scientists.”
This was not greeted as good news; indeed, to say sufferers were—to use a Britishism—gobsmacked was an understatement. The claim that ME/CFS could be ameliorated by graded exercise therapy (and cognitive behavior therapy) as the study suggested ran directly against many patients’ experience of the condition; moreover, the apparent success of these treatments in the trial suggested that the condition, or rather the prolonged experience of the condition, was mostly cognitive—‘in their heads,’ so to speak—rather than the result of any number of possible biological and organic infections or physical responses to the environment.
So what happens when the largest trial of its kind produces a result that overturns patient expectations and understandings? The institution of medicine trusts the trial; that’s the power of science, after all: the capacity of an appropriately designed study to disentangle perception from probability, cause from correlation, personal bias from objectivity. The PACE trial was “rigorously designed,” according to CNN, and it was published in one of the most prestigious medical journals, The Lancet, so its conclusions not only had the power to affect the way the condition was treated, they had the power to set the agenda for further research, potentially foreclosing other approaches.
