Usual Suspects Say NICE Made Eight Errors; Nonsense, Says Committee Member Adam Lowe

By David Tuller, DrPH

Update Jan 5, 2023: Martin Rücker, the German investigative journalist who posted the snippets from the draft article, touched base after seeing this post and assured me that the copy he received was not a formally embargoed version provided to reporters before publication. In other words, no embargo was broken, as I had assumed might have been the case. Rücker received the article through a “secure source,” he told me. It is not necessarily clear that the article has already been peer-reviewed or when it might be scheduled for publication.

The usual suspects—several dozen of them—are apparently about to publish a cri de coeur outlining their objections to the ME/CFS guidelines issued in October, 2021, by the UK’s National Institute for Health and Care Excellence (NICE). The upcoming article is expected to appear in the Journal of Neurology, Neurosurgery, and Psychiatry. Not surprisingly, the lead author is our old buddy, Professor Peter White, one of the three main investigators of the now-discredited PACE trial. His PACE co-leads, Professors Michael Sharpe and Trudie Chalder, are also signatories, along with a glittering array of other stars of the biopsychosocial firmament.

Unusually, details about the paper were recently spread around on social media. The source seems to have been an embargoed copy—that is, the advance version of a study often distributed to reporters so they can prepare in-depth reports timed to appear right after journal publication. Of particular note, the authors accuse the NICE committee of having engaged in eight “major errors.”

(In what appears to be a petty show of defiance, the authors insist on using the term CFS/ME, even though the guideline and government agencies in the UK now call the illness ME/CFS. This decision is silly and childish–it makes the authors look out-of-step and clueless.)

Variations of these tired arguments have already been promoted aggressively by members of the GET/CBT ideological brigades during previous outbursts over the new guidelines. Reprising them again here does not strengthen them. In any event, they have been effectively and repeatedly rebutted.

The authors of the new article seem to believe numbers will bring heft and momentum to their loud collective whine. They are, it would appear, dismayed, perplexed and enraged that the scientific consensus in this field has shifted away from their once-hegemonic views. They know they no longer control the narrative—even as they seek to expand their GET/CBT paradigm to the long Covid domain. It must be a shock to lose relevance in this fashion.

Adam Lowe, a writer in Manchester, England, was one of five patients or patient representatives on the 21-member NICE committee. We spoke earlier today about the eight “major errors” cited by these critics. In our conversation, Adam explained why each item on this list is essentially bogus and unwarranted.