Snippets from White P et al. "Eight major errors in the review process and interpretation of the evidence in the NICE guideline [...]" [for ME/CFS]

There's still a huge deferential approach to 'white coat' professionals in the UK, promoted largely by a lazy, scientifically ignorant media and a scientifically timid political class. Unless an academic clinician is actually involved serious malpractice or treats or advocates for an unpopular minority then they can write and say anything they like without any reputational damage because no one is going to call them out in a public arena.

 

Gravity doesn't apply to the coyote unless he looks down. Without a roadrunner telling the coyote to look down, it's perfectly safe.

Which I just realized is such a perfect metaphor for suspension of disbelief.

 

was it the nature of the roundtable that only the heads of stakeholder groups could go? I mean, why didn't one of the ideologues themselves show up to argue these eight points?

 

by the way, I had some communication with the journalist who leaked the snippets. I posted an update to my blog post. this was not an embargoed copy--he was sent a draft of what was apparently submitted to the journal. It's not clear it's been accepted or even peer-reviewed, although presumably it will be, especially given that Carson and Stone are co-authors are are also connected to the journal.

 

Roundtable members had to be specified representatives of stakeholder organisations. That meant Royal Colleges, equivalent organisations for other Healthcare professions and charities and patient support organisations. Some of the 8 points were specifically raised but Peter Barry had a concise and eloquent reply ready to hand. It was clear to everyone that the objections could not be sustained. The chairman didn't rush anything. There was nothing more to say.

 

Right, but it could be any representative the stakeholder organization wanted to designate for this purpose? Rather than only, say, named officers like the president of whichever royal college?

 

In terms of the people who hold positions that get to make judgements over how we are treated, I'd say that things look quite a bit worse than a decade ago in the UK. I struggle to see a way forward from here that isn't going to see things getting worse.

 

Yes, that's right.

 

Yes. But if I remember correctly the agenda was to find a way for provider groups to be happy about implementing the Guideline. So it might have been difficult to send an interested researcher to give blessing on behalf of a whole professional body. Lynne Turner Stokes was there and in practice her role was as 'expert' for the Royal College of Physicians, rather than (as may've been billed) head of the Rehabilitation Medicine organisation, but the President of RCP was there as well, even if he said nothing. L T-S could also argue that she was impartial. I think sending a PACE author or associated would have looked wrong to almost everyone, on grounds of conflict of interest.

The reality is that Peter Barry made it clear in his introductory remarks and responses that he was fully conversant with all these objections and had cut and dried reasons for rejecting them.

 

they only appear when they are preaching to the converted; on the rare occasion when there is someone in the audience who questions anything they bat it away with some kind of reposte, or use
classic deflection;

Deflection in psychology – what it is, why people use it, and how to deal with it
https://www.uktherapyguide.com/news...ople-use-it-and-how-to-deal-with-it/nblog1246

 

They've got no problem appearing in all sorts of news outlets too though. It's the scientific debate they shy away from. Not the debate with "laypeople" because they can always refer to authority in that.

 

Eight (or more) logical fallacies in that paper bemoaning the new NICE guideline for ME/CFS

https://thesciencebit.net/2023/01/1...-bemoaning-the-new-nice-guideline-for-me-cfs/

 

Solid takedown. The logical fallacy framing is probably the strongest, IMO, at least as long as real life data get dismissed reflexively (not much you can do when professionals debase themselves by calling SF-36 ratings showing our quality of life is horrible as a "hot take"). The entire construct is entirely built out of logical fallacies, and so are the explanations. In the end, they all boil down to, as in Liar liar: "the truth is devastating to our case". Even their excuse for downgrading the primary outcome in PACE was simply: "we prefer", even though in their submission for the trial they explained it was the exact same they've done many times before. It's like an attempt in maximizing all the biases.

There really are major issues of basic reasoning here, it only works because there is no accountability in this system. None of this even makes sense, it's extraordinary claims that never even had a single bit of evidence. And it perpetuates only because of mass cowardice, the inability of the entire system to recognize its own failures, because as long as the failures are not acknowledged they can never be held accountable. Honor systems don't work, rules are just words when they aren't enforced fairly.

I'd love to see more reasoning about logical fallacies in psychology, it's sad that it remains almost exclusively the realm of philosophy, but when you notice how much of clinical psychology is built out of 3 logical fallacies in a suit, it pretty much explains why they keep out of reasoning errors. But IMO this is the way psychology could be the most useful at, if only the entire discipline wasn't built out of doing the opposite.

 

An excellent piece as always by @Brian Hughes. I would love to be a fly on the wall of the 48 authors reading and discussing this logical exposition. Hopefully any peer reviewers of the ‘Eight Major Errors …’ draft will read and consider Brian’s analysis carefully.

It is not surprising we see such logical incompetence from the supporters of GET/CBT given they have (presumably including some at least of the 48) repeatedly spread misinformation:

1. A high profile representative of one of the Royal Colleges, revealed through a FOI request, but not formally identified, sought to pressure NICE to falsify their own evidence review to protect the use of curative GET/CBT
2. About the resignations from the NICE guidelines committee, which did not take place until after the committee had agreed for publication the guidelines as they now stand, it has been claimed they represent a profound conflict within the Committee about what was acceptable evidence, which is confusing give those resigning have never stated this either publicly or within the Committee and they delayed their resignations until after they had agreed to the final draft of the new guidelines. It is unfortunate that those that resigned have failed to say anything in response to the published claims by others that their resignations represent fundamental disagreement with the NICE process. One wonders if, when various high profile objectors realised their backstage manoeuvres were failing, pressure was put on these individuals to resign as a PR stunt. It should also be noted that the GET/CBT supporters never mention the resignations from the previous ME/CFS guidelines committee advocating GET/CBT of the patient representation, which did take place before any guidelines were finally agreed.
3. About what GET involves. The defenders of GET/CBT have been and are still are saying that the PACE study is valid science strongly supporting GET which was given as justification of the British specialist ME/CFS services approach. However they are also now saying that they are not and never have provided GET based on fixed increments as defined in the PACE manual. If this is the case, then for well over a decade the specialist services have been providing their own novel exercise programme that has never be scientifically evaluated. So they are claiming their practice is supported by PACE but at the same time is different to the PACE recommendation. I suspect on the basis of patient reports in social media there has never been consistent implication over the UK of any form of GET and that many coal face practitioners have modified what they do expressly to avoid causing harm
4. The survey of UK patients undertaking GET commissioned by NICE overwhelming found participants were not help or were harmed. The defenders of GET/CBT say this is not scientifically reliable. I would agree it does not give us clear percentages of how many will be helped and how many will be harm, as it was completed by volunteers rather than an examination of an entire population. However it does indicate serious numbers were harmed by GET as provided by the British specialist services who seem confused by whether they are offering PACE type GET or something completely different and who are unable to provide outcome measures for this intervention from the very services they established and in some cases managed. I understand that several specialist services attempted an online survey of invited patients to counter the NICE survey, but it was never published.
5. If the NICE patient survey, which found broadly similar negative response to previous surveys, should be ignored because it relied on self reported outcomes, why is then PACE whose positive results relied on patient’s self reported outcomes, but down played the negative objective outcomes, be considered conclusive. Further the only additional information presented by the GET/CBT supporters is subsequent assertions that they have seen patients get better. Surely the whole point of evidenced base medicine is to go beyond the assertions of prominent practitioners. I am sure when blood letting was questioned many of the then great and good were equally adamant their blood letting had cured people. Also if the GET/CBT was so effective where are the clinics outcome measures, where are the endless single case studies, etc.
6. The Royal Colleges initially threatened to boycott the draft PACE guidelines and continued to lobby behind the scenes against them, but when invited to an open workshop failed to present any reasonable objections to implementing the new guidelines and actually concurred with the decision to go ahead with their publication.
7. Though not one of the eight points we are still seeing the claim by GET/CBT advocates that anti science patient advocates had highjacked the entire NICE process, and a minority of patients and patient group representatives overruled the majority of professionals. This stale trope of anti science activists has emerged time and time again without any evidence to support it, and surely in this situation has become a total absurdity.

I did wonder if I should continue to get to the magic number 8, but decided not to as it seems already very evident that the eminent defenders of curative GET/CBT are not interested in advancing science but in self justification and tend to crumple when they can not overrule by rank or prestige. In the light of the responses to this draft article shared in draft via Twitter by a third party, I wonder if this article will ever see the light of day in its current format.

[edited to clarify confusing sentence structure, though not very successfully.]

 

I wasn't sure I agreed with his analysis completely, and this was one of the places that did raise a couple questions. I think he might be using "certainty" with respect to quality of the evidence but NOT in the GRADE sense. In other words, he's saying, the quality was by definition abysmal because these were unblinded with subjective outcomes, so the definition makes no difference to that. That sidestepped the point I think the authors were making--that the definition forced a downgrading of certainty via GRADE.

In terms of the definition, it was basically an operationalization of the IOM definition so it varied a bit--just like the 2007 guideline definition was NICE's operationalization of what was there at the time. I think pointing to the hypocrisy involved in advancing this argument when the same people love the 2007 guideline would be warranted.

 

I guess not. Or they're desperate enough to throw caution to the wind.

They never do. They don't want to show themselves up, presumably.

It's an operationalised version of the IOM. Personally, I don't think it's significantly different, though I can see why others would disagree. I certainly don't think it's a wildly novel/radically outrageous definition that has shaken ME research to its core or anything, which is what they imply.

We went off what each paper said about prevalence of PEM, and then off the criteria used if that wasn't available. We did have a process for ruling stuff in if it met certain requirements that made it more likely they were talking about PEM but using another name for it, for example.

That was my reading of Brian's intent too. Maybe something for someone to flag for clarity?

The NICE 2007 point needs to be made again and again. They loved novel definitions and recommendations without major evidence back then. Remember that it was four years before PACE, and yet they still recommended GET.

 

It's an opinion piece, though. I doubt there would be peer review, opinions are just that, opinions.