By David Tuller, DrPH
The draft of the new ME/CFS guidance from the UKâ€™s National Institute for Health and Care Excellence is out–posted just after midnight, London time, on Tuesday, November 10. This is the headline: The draft represents a repudiation of the GET/CBT paradigm and the deconditioning hypothesis.
Here are key take-aways:
*Graded exercise therapy, other interventions based on the assumption that deconditioning plays a causal role, and the Lightning Process are explicitly NOT recommended.â€”they fall under a â€œdo not offerâ€ category.
*Cognitive behavior therapy as a cure or as a treatment for the illness itself is explicitly NOT recommended.
These positions have nuances. While GET is disavowed, the draft provides guidelines for physical maintenance and physical activity programs. While CBT-as-cure is out, the draft includes guidelines for providing CBT as adjunctive care for patients seeking psychological support and/or help managing their symptoms.
Many will object to some language and phrasing or find it to be ambiguous. Others will argue that proponents of GET and PACE-type CBT could cite passages selectively in an effort to bolster their claims. Certainly stakeholders on all sides will deconstruct the draft and submit their comments over the next six weeks. I’ll write more about the draft and subsequent developments in the next few months.
Not surprisingly, the Science Media Centre has rounded up some of the leading lights of the biopsychosocial ideological brigades to offer commentâ€”Professor Sir Simon Wessely, Professor Michael Sharpe, Professor Trudie Chalder, Professor Alastair Miller and Professor Peter White. Iâ€™m not going to bother quoting any of their comments here. They bleat in protest at the content of the draft, once more citing their flawed body of research. .
The SMC did not present reaction from anyone supporting the NICE position, so it will be interesting to observe the UK coverage of the draft release. In the past, for the most part, opposition to the GET/CBT paradigm has not come from within the heart of the UK medical-academic-industrial complex–certainly not from a key agency like NICE. So this development presents the SMC with a particular challenge.
Given the balanced make-up of the NICE guidance committee, it would be hard to attribute the recommendations in this draft to the pernicious influence of a powerful lobby of unhinged, anti-science patients. But that argument could emerge during the comment period, as it emerged after the US Centers for Disease Control dropped the GET/CBT paradigm three years ago. The SMC helped perpetuate that impression in the CDC case, so it could try to disseminate it again this time around.
The biopsychosocial ideological brigades have regarded their hegemony over this domain as the natural state of affairs. The NICE draft indicates that they are no longer the dominant force in the field and no longer control the narrative. They likely find these circumstances to be unsettling, perhaps even outside their professional experience. Their SMC statements reflect some dismay, even panic, that their credibility now appears to be in question.
These folks will continue to protest. They will mount a vigorous response to the draft. Maybe the SMC will try to persuade one of its BFFs among the UK press corps to write articles supportive of their position. Perhaps, in the revision process, the guidance will shift bit back in their direction. Or perhaps ME/CFS patients and advocates will themselves successfully push for their own desired changes.
In any event, hereâ€™s where things stand: A carefully appointed committee has reviewed the evidence, and the members have approved a draft document. We can be sure that not everyone agrees with everything, and the final version published next spring could look very different. But this draft is unquestionably a big loss for the PACE investigators and their cabal.