51 authors
In October 2021, after much resistance from British psychiatry in particular, NICE’s latest guideline on ME/CFS was published, which some of the Royal Colleges still refuse to implement.
During last year, that resistance reached its climax in this publication by the crème de la crème of European Psychiatry: even godfathers of psychiatric interpretation of ME who had long since retired were conjured out of the top hat.
With united efforts, this article was published on June 10, 2023, its access being highlighted in red capital letters like FREE (unlike most of these authors’ publications, which are almost always behind a paywall: how to keep the financially disadvantaged stupid). All ME sufferers in the world were thus given free access to this nauseating creation of those who had gaslighted them for decades, resulting in countless increasingly ill fellow sufferers (and worse).
From within the ME community, there was a horrified but substantiated response by ME Action and British scientists Salisbury, Saunders and Edwards, among others. David Tuller also wrote a blog about it.
NICE itself responded to the allegations shortly thereafter. We are publishing that response separately.
For the sake of historiography, we publish the abstract of the paper.
Abstract
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a disabling long-term condition of unknown cause. The National Institute for Health and Care Excellence (NICE) published a guideline in 2021 that highlighted the seriousness of the condition, but also recommended that graded exercise therapy (GET) should not be used and cognitive–behavioural therapy should only be used to manage symptoms and reduce distress, not to aid recovery. This U-turn in recommendations from the previous 2007 guideline is controversial.
We suggest that the controversy stems from anomalies in both processing and interpretation of the evidence by the NICE committee. The committee: (1) created a new definition of CFS/ME, which ‘downgraded’ the certainty of trial evidence; (2) omitted data from standard trial end points used to assess efficacy; (3) discounted trial data when assessing treatment harm in favour of lower quality surveys and qualitative studies; (4) minimised the importance of fatigue as an outcome; (5) did not use accepted practices to synthesise trial evidence adequately using GRADE (Grading of Recommendations, Assessment, Development and Evaluations trial evidence); (6) interpreted GET as mandating fixed increments of change when trials defined it as collaborative, negotiated and symptom dependent; (7) deviated from NICE recommendations of rehabilitation for related conditions, such as chronic primary pain and (8) recommended an energy management approach in the absence of supportive research evidence.
We conclude that the dissonance between this and the previous guideline was the result of deviating from usual scientific standards of the NICE process. The consequences of this are that patients may be denied helpful treatments and therefore risk persistent ill health and disability.
Source: BMJ Journals, open access
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