Mark this day in your calendar. We could be observing the beginning of the end of a decades-long medical scandal.
In the UK, the National Institute for Health and Care Excellence (NICE) have published new draft guidelines for the management of “myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome”.
These are very significant and mark a potential — and heretofore unforeseeable – triumph for empirical science over clinical folklore.
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In short, while it is increasingly beyond doubt that ME is an inherently physiological illness, in some countries — especially Britain — the field of ME care has long been in the sway of psychological and behavioural therapists. These folks, some of whom are high-profile academics of considerable eminence, have simply insisted that ME is propelled by psychological factors, if not caused by them. Such victim-blaming is clearly rooted in historical misogyny, and flies in the face both of empirical evidence and of widely shared scientific consensus.
As a consequence, patients in the UK have long been told that they are effectively causing their own symptoms through faulty reasoning and counterproductive behaviour. I have described this as nothing less than twenty years of institutional gaslighting.
And, worst of all, the psycho-behavioural cartel have had the official treatment guidelines completely their own way. By dictat of NICE, patients have been formally directed toward tenuous psychological and behavioural therapies that are demonstrably ineffective and often serve only to worsen symptoms.
The NICE imprimatur has made these therapies appear unassailable for many years, a policy stance that has influenced the health services of many other countries who see British medicine as authoritative.
Until now, that is. Or so it seems.
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Do not offer people with ME/CFS: any therapy based on physical activity or exercise as a treatment or cure for ME/CFS; generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses; any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy… (Section 1.11.16)
The guidelines also pour cold water on cognitive behavioural therapy (CBT):
Only offer cognitive behavioural therapy (CBT) to people with ME/CFS who would like to use it to support them in managing their symptoms of ME/CFS and to reduce the psychological distress associated with having a chronic illness. Do not offer CBT as a treatment or cure for ME/CFS (Section 1.11.43).
These two therapies — CBT and GET — have been championed in extremis by the psycho-behavioural establishment for many years. They have been the central planks in their entire worldview of ME. Time after time these people have promoted the two treatments, rejecting all criticisms of the PACE Trial, their beloved (but now very beleaguered) flagship research study that they claimed demonstrated their efficacy. Indeed, so loyal have these people been to the PACE Trial, they literally hired lawyers to try to prevent independent scientists looking at their data, for fear it might be discovered that their claimed empirical evidence was actually not worth the paper it was written on (making it easy to rip to pieces!).
(The draft guidelines also reject the so-called Lightning Process, a piece of bizarre high-art pseudoscience that had also been embraced in psycho-behavioural circles.)
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And what are the psycho-behavioural establishment saying today?
Well, over at the Science Media Centre — an available-for-hire media consultancy with close links to the PACE Trial investigators — some of them have been offering statements.
“NICE is usually commended by being led by the science. It is therefore a great surprise that this guideline proscribes or qualifies treatments for CFS/ME for which there is the best evidence of efficacy, namely graded exercise therapy (GET) and cognitive behaviour therapy.”
The problem, of course, is that GET and CBT do not boast “evidence of efficacy” at all. That is the whole reason that NICE rejected them.
The mood over at the SMC seems a bit all-caps-Trump-Twitter-meltdown, if you ask me.
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Expect this bunker mentality to continue.
However, out here in the real world, this has to be seen as a good day. The new guidelines — at 72 pages — cover a lot of ground, and are as yet just out for consultation.
But it is truly heartening to see such a forthright dismissal of this consecrated bunkum — and with it a rejection of the horrible, insidious, and demeaning implication that ME, somehow, is “all in the mind.”