For decades in the UK, parents of children with what was formerly called chronic fatigue syndrome have run the risk of being accused of making or keeping their kids sick and/or not pursuing proper treatment strategies. These cases have been based on the discredited belief that graded exercise therapy (GET) and cognitive behavior therapy (CBT) were the treatments-of-choice. The PACE trial, which published its first results in The Lancet in 2011, purported to have proven that these treatments were effective.
That study, as we all now know, was a piece of crap. The investigators engaged in methodological shenanigans that, at best, constituted research misconduct and, at worst, constituted something worse. The most disturbing and bizarre feature of the trial was the fact that a significant minority of participants had already met a key outcome threshold at baseline. Participants could be deemed “recovered” in the PACE trial even if they reported reduced physical function and greater fatigue than at the start of the trial. The authors failed to disclose this paradoxical quirk of the trial, presumably because they recognized that it was absurd.
That adherence to the PACE prescriptions should have ended when Britain’s National Institute for Health and Care Excellence (NICE) published revised ME/CFS guidelines in October, 2021. The new guidelines rescinded the agency’s prior recommendations for GET and CBT as curative treatments and proposed management strategies instead. NICE guidelines technically are designed for use in England and Wales, but they are highly influential in the rest of the UK and around the world as well. Given NICE’s prominence and authority, this updated approach should now be considered the standard-of-care......................................
