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The decision by NICE to pause the publication of new guidelines for ME/CFS was misjudged
On 17 August the UK’s National Institute for Health and Care Excellence (NICE) “paused” publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Earlier in August, three members of NICE’s 21-person guideline committee had resigned because they did not endorse the new draft guideline.
It had taken them some nine months to announce their dissent from the draft guideline – published in November 2020 – which contains a significant departure from NICE’s 2007 guidance: It cites a lack of evidence for the effectiveness of cognitive behavioural therapy and graded exercise therapy (CBT/GET) for those with mild or moderate ME/CFS, specifically describing the quality of the evidence favouring these treatments as “very low” or “low”. Further, the Royal College of Physicians and the Royal College of Paediatrics and Child Health have objected to the removal of CBT/GET as recommended treatments for ME/CFS.
At the time of writing, NICE’s finger continues to rest on the “pause” button. Despite having used “its usual rigorous methodology and process in developing this guideline”, which were followed “to the letter to bring together the available evidence and the real, lived experience and testimony of people with ME/CFS, we have not been able to produce a guideline that is supported by all”.
So what? If “rigorous methodology and process” have been followed “to the letter”, and all the available evidence has been evaluated, that is what matters. Why should a guideline’s publication be “paused” because not all committee members support it and that certain Royal colleges object? The notion of evidence-based guidance having to be “supported by all” is a spurious one, implying – or at least inviting the inference – that scientific consensus is an aim worth striving for.
No, it is not. Rather, it is the heat of debate and disputation that ultimately generates light to illuminate truth. For example, the philosopher Sir Karl Popper (1902–1994) promoted the virtues of argument for its own sake, and in an editorial on Popper for the journal Medical Hypotheses (2009; 73: 871–874) Prof Mark Notturno observes that “we now hear far more talk about the scientific consensus than we do about justified true belief”, citing Popper’s view “that any philosophy that pretends that truth does not exist, or that it is a matter of consensus, is authoritarian at its core”.
The resignees – rather than acting on a point of principle – abandoned a key principle which was to discharge their responsibility to the scientific process. If they believed that NICE’s “rigorous methodology and process” was flawed in drawing up the new guidance, they had a moral obligation to adduce evidence and present arguments to explain why their fellow committee members were wrong and why they were right… and they shirked it.
The revolutionary socialist Rosa Luxemburg (1871–1919) felt that “freedom is always and exclusively freedom for the one who thinks differently”, a point worth making at a time when, in many parts of the world, people are murdered for asserting their right to such freedom. The resignees could have indulged their freedom to explain why they thought differently to their fellow committee members. That they refrained doesn’t negate NICE’s “rigorous methodology and process”, but it does negate the resignees’ credibility as adherents to the tenets of evidence-based medicine. Thus, their resignations are irrelevant.
But the fact that, at the time of writing, NICE has not yet published the new guidelines is ominous. This brings me back to Popper’s association of consensus with authoritarianism, in which respect I was interested to read psychologist Prof Brian Hughes of NUI Galway’s piece in www.thesciencebit.net (22 August 2021) and titled “NICEXIT: Royal colleges look to ‘take back control’ of treatment standards”.
Prof Hughes refers to what “seems to be a widespread view within Britain’s ‘Royal Colleges’ that they form a kind of medical aristocracy, a ruling class with feudal entitlements, deriving authority from a pre-ordained divine right of kings. They expect acquiescence and are shocked when they don’t receive it.”
Could it be that NICE is in such thrall to the notions of achieving consensus and placating the Royal colleges that they have opted to invoke both the Principle of the Dangerous Precedent and the Principle of Unripe Time? These principles first appeared in Microcosmographia Academica (1908), a mischievous tilt at university politics by the classicist Prof Francis Cornford (1874–1943), who married Charles Darwin’s granddaughter.
According to Cornford, the Principle of the Dangerous Precedent is not to take a right action “for fear you, or your equally timid successors, should not have the courage to do right in some future case…”, whereas the Principle of Unripe Time implores people not to “do at the present moment what they think right at that moment, because the moment at which they think it right has not yet arrived”.
Well, the moment has arrived and the right action is to publish the new guidelines. If resignees and certain Royal colleges are not prepared to endorse “rigorous methodology and process” they must be ignored. What must not be ignored are those who continue to suffer daily from ME/CFS.