Trial By Error: NICE Announces Upcoming Release of ME/CFS Guideline After Prolonged Hostage Drama

By David Tuller, DrPH

Two days following a high-profile meeting with opponents and supporters of its new-but-still-unpublished ME/CFS guideline, the UK’s National Institute for Health and Care Excellence announced on Wednesday that it plans to release the document next week. The decision comes after a powerful cabal of medical practitioners held the process hostage for two months with unwarranted criticisms and bogus claims.

(Yes, I’m referring to Professor Michael Sharpe and others of his ilk, whose unfortunate delusions about the quality of their research persist. Sad! I advise these self-regarding experts to discuss their inevitable feelings of rejection, loss and public humiliation with their therapists and stop inflicting their anti-scientific notions on unsuspecting patients.)

The ongoing drama has inflicted serious harm on the patient community–a continuation of decades of abuse from the medical establishment in UK and elsewhere. And certainly publication won’t end the suffering, as patients have properly noted. One regular and valued Virology Blog commenter, who goes by Lady Shambles, wrote the following sharp critique:

“Pardon me if I don’t get too excited by the reports which have come from yesterday’s Roundtable meeting.

i) it should never have taken place at all

ii) given it did take place the lack of transparency does not please most (probably all?) people with ME

iii) I’ll only ‘believe it when I see it’ wrt the embargoed Final Guideline being published without change

iv) even if it is published it’s still worse than the Draft [published in November last year] and the Draft was unfit for purpose (no matter how valiantly our representatives tried to make it better .. this is not a criticism about them). This is not what a Guideline for a severe neuroimmune disease should look like in the C21st

v) it will make absolutely zero difference to my own experience of this disease unless I’m abused and gaslighted less when I meet medics: what an indictment that is.

vi) I, like many other people with ME, am at a point with my disease presentation where I’m looking down the barrel of a gun. Life is ticking louder for some of us than others and those with presentations where this is true have NO chance of any useful, ameliorative help at all.

vii) thus if the Guideline is published as per the 18th August document then it not a day for celebration but one in which the medical profession, the medical sciences, Establishment Quangos and Luddite Royal Colleges should hang their heads in shame that *this* is all we’re worth. There is no good result here. There are just 50 shades of grim.”

I can’t really refute these views. I obviously can’t speak from the devastating perspective of having been a patient with this terrible disease for years, if not decades. I believe publication of the guideline will represent a key step in the process of change–but without continued advocacy and pressure it will not amount to much on its own. And as indicated in Lady Shambles’ comment, many patients argue that changes from last November’s draft to the final version have weakened the document.

In my non-patient view, both the draft and final version are clear and explicit that graded exercise therapy, or any therapy based on fixed incremental increases in activity, is not recommended. And any form of cognitive behavior therapy based on the notion of abnormal illness believes and/or deconditioning is also not recommended. Does the guideline leave room for supportive exercise regimens and psychological interventions, should patients desire them? Yes. Does it leave an opening for continued abuse of patients? Of course. Any clinical guideline can be misinterpreted or misapplied by those delivering care.

Here is a comment I wrote on Facebook in response to some of the issues noted by patients.

“I understand and sympathize with all the concerns expressed here. Nothing is going to turn things around immediately. Every positive development is just a step and will need to be built on, and will not undo any of the harm caused in decades past and the harm that continues to be done. A new guideline will not solve the problem of lack of proper funding, ongoing bad research into bogus interventions (FITNET, for example), poor understanding among doctors, lack of proper services, etc. A huge amount obviously remains to be done. But it will still be a big deal if the likes of Sharpe, Chalder, etc., can no longer cite NICE’s 2007 guideline as evidence that supports their shenanigans. It will have an impact in other countries, where they were waiting for this new guideline to make their own determinations. It is a big deal to be able to say that NICE does not support GET and “curative” CBT, but of course the process of change in medical thinking and practice is a long-term project. And even when the guideline is published, as it hopefully will be, it will require lots of pressure and public attention to force changes in the approach to so-called “medically unexplained symptoms,” Long Covid, and other complex illnesses. That is mainly why I’m continuing my work and not just hanging it up right now.”

Jonathan Edwards, an emeritus professor of medicine from University College London, attended the Monday meeting hosted by NICE as a representative of the Science For ME forum. (I participate in the forum.) In a comment under my last Virology Blog post, he offered the following thoughts on the current moment:

“I have sympathy with a lot of the cautious comments. In terms of building adequate ME/CFS services I think this is much more the end of the beginning than the beginning of the end. But for reasons not necessarily related to this meeting I think that NICE and most of the organisations present at RT [roundtable–that is, Monday’s meeting] see things the same way. There is a huge amount of work to do in educating health care professionals in a more sensible approach. There is also work that needs to get started on gathering reliable evidence for exactly what factors in such an approach are most important, so that next time there is a guideline committee there will be some evidence of a reasonable standard based policy on. And there is a need for adequate funding of service provision and research.”


In any event, here is the statement that NICE posted today:

NICE will publish the guideline following a meeting of its Guidance Executive next week.

Today’s announcement follows a roundtable meeting held earlier this week involving representatives from a range of patient and professional organisations, to discuss concerns raised about some aspects of the guideline that had led to the publication of the guideline being paused.   

Professor Gillian Leng, NICE chief executive, said: ‘We would like to thank all those who took part in the meeting earlier this week for their contributions to what was an extremely open and positive discussion. During the meeting we had a constructive conversation about all the key issues that had been raised €“ those concerning the criteria for diagnosing ME/CFS, the decision not to recommend graded exercise therapy, the role of CBT, and the particular challenges of treating children and young people with the condition, as well as the approach taken to identifying and considering the evidence.

‘We are now confident that the guideline can be effectively implemented across the system and we will discuss the input from the meeting at our Guidance Executive next week with a view to publication of the guideline.’€   

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