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]

I fear I am confused and probably woefully behind current science and consensus (among those who are legitimately studying ME) about PEM. I thought it was the one symptom/characteristic that was unique to ME and therefore an important diagnostic criteria. I take it this is not the case?

Please forgive me for being so out of touch. I'm only slowly learning, as I haven't had the energy to read up much on this wonderful site (Sci for ME) yet. Thanks!

 

Not 100% sure who you mean by 'them' (in my original post I referred to ordinary, non-ideological therapists as well as the culprits behind the snippets we're discussing) but hopefully 'them' are included in the list below.

I trust that the ordinary therapist wants to do the best by their patients (even if they don't always know how).

I hope that as more clinics become NICE-compliant this will result in better care for patients overall (because then the ordinary therapist knows more about the how).

I fear that as long as the authors and signatories of this paper remain free to spout their zombie theories safe care for patients will remain hit and miss.

As for the authors and signatories of this paper, I'd trust them about as much as I'd trust the tobacco industry if they told me smoking was safe as long as I started with 1 cigarette a day and gradually worked up to a pack.

But the point isn't really if I or anybody else here trusts them, a much more important question is who in a position of power* is at risk for falling for these zombie arguments - and how to make sure they don't.

*Position of power is meant in the widest sense and includes individual therapists, benefit assessors high and low in the system, research funders and ethical reviewers, politicians and more.

 

Your original assumption was correct, PEM is indeed considered a key feature of ME and is therefore an obligatory component of all the more recent diagnostic criteria.

The only ones still arguing against it is a small but influential group of psych-aligned people who have a vested interest in subsuming ME into some general, vague fatigue melting pot because then they can keep peddling their CBT/GET 'treatments' and don't have to admit they were wrong about ME.

PEM has been around for yonks and they know it. They're intentionally trying to sow doubt about the science in the minds of readers. Tactic straight from the tobacco/oil/sugar/etc industry lobby playbook.

 

True, the point isn't if we trust them. We haven't for a long while, but with the NICE review and others like it the wider academic world and a lot of patients are catching on too. Which means their bottom-line is gonna take very hard hits as well as their ego's. I don't think they're doing themselves any favours by staying in the public eye the way they have been doing btw.

Support seems to be crumbling and they seem on the back-foot now which as we know is a rotten position to be in. For once we've got the powerful instances at our back and they're coming across increasingly irrational. Their old tropes are biting them in the back or will be biting them in the back too. What Nina Steinkopf did in Norway was tremendous work for example. Their BPS-crew said the police had advised them to go behind closed doors, she calls the police and there seems to have never been any company between said crew and the police.

They won that initial battle by claiming us activists but by that simple act of Steinkopf we can now throw the simple fact that they lied in their faces for that particular branch of the BPS-crew, meaning they'll eventually lose the war. It's also why we should stay together as patients and representatives of the M.E.-community and keep our eye on the ball. They're getting caught and called out on lies they aren't used to and it's slowly changing the paradigm.

Their new paper is likely gonna be disseminated by a bunch of scientists and a number of journalists that are on the side of science done right. I predict it's gonna backfire, but it's also one of a few tricks they've got left. Go out with a bang or fizzle out. I'm actually glad they're doing the former as it gives us numerous chances to get our points across and I hope the people that have now seen this are gonna keep a close eye on FND, MUS, CSS and all that other crap. Science was always on our side but with NICE and other bodies now too, more or less, they face a battle that's increasingly uphill.

 

I might be a dreamer or not realistic with regards to this, but I think the way these people are conducting themselves and how they are blowing their ridiculous stance up in the open is gonna bite them in the ass. Might even finally make Cochrane's position completely untenable even for them. I'm not just talking about this upcoming review but the situation in Norway and Denmark and other places they've ran rampant. Publicity has always been in their favour but that was always from a position of power and a position where the science into GWS, M.E. etc. hadn't brought up much of anything. I very much doubt that situation is still the same on both fronts.

 

It will, but if history is a guide, there won't be any real consequences. Worst case is they are discredited and take an early retirement while continuing to get private praise and admiration from their colleagues, who will wax poetic about the good old times and wanting to get right back to it.

As far as I know no one went to prison or faced any hardship for lying about tobacco being safe. Nothing ever came out of the many times a "psychosomatic disorder" was debunked. It's never anyone's fault. Patients can be endlessly blamed so that no physician ever is. Very strong bunker mentality.

They will inevitably lose, but we'll have lost so much, literally millions of lives, and they won't really lose anything substantial. I doubt anyone even loses their medical license, it will be kids' gloves and not even the pretense of a slap on the wrist. At least for a while. Once enough time passes they will be seen as monsters, or incompetent fools at best, but they'll likely be dead by then. Eysenck probably never lost a good night's sleep over what he did.

So they feel pretty safe going all in. There is basically no amount of malice that will change anything in the end, in fact it keeps delaying while adding nothing to their future problems. Even if for most of it basic incompetence can be blamed, the point where it turned into malice was many years ago, and even that changed nothing. If anything, it gave them more years to be incompetent.

Which really says a lot about them, and about why this is the most common failure in medicine: there are never any consequences, ruining millions of lives is not even an offense, it's considered good until it isn't, but even then it's no one's fault. Until that changes, this pattern won't. It will have to be changed from the outside, or until a huge paradigm shift caused by scientific breakthroughs.

 

Thanks for clarifying that for me, Ravn. I hope to spend more time on this site in the next few months and get more up to speed about current research and also the history of (and sadly continuing) malpractice concerning ME.

 

I just read it. Wow. I mean, he offered a paragraph to counter the extended statements from you and Nina? It demonstrates a certain dismissal of or contempt for the NICE process, or at least it could be interpreted that way. I might have been a bit insulted as a member of the committee that only a paragraph's worth of thought had been given to the matter.

 

I guessed that he must have been delegated the job of putting the psych case but not quite realised what he was supposed to do. It must have been tricky trying to say - I know your committee is going to rubbish us but we think all the research is wonderful even if someone is going to say it isn't. But the result seems to indicate a 'lack of communication'.

Presumably he was included in the author list here as deserving at least to get a publication out of his efforts - or just yet again to act as chorus line.

 

When I read Dr Husain’s testimony, I could not figure out the point he was making (if any). As I understand it, an expert testimony is meant to address one or more issues raised throughout the guideline development process, but his was no more than a description of the services he provides as a consultant. It seemed out of place and I found it rather contemptuous of him to provide NICE with one single paragraph.

 

Eventually read it, thanks for the link* @MSEsperanza, and I can see what folks are commenting on --- e.g. no references to published studies, with expert interpretation of same, supporting the treatments they offered (CBT & GET). Bit of waffle about e.g. pragmatic approach - mind-body approach ---- sure the NICE panel must have been confused. If regurgitating clichés was part of the scoring system, then they should have come first in that category.
Well, thanks to folks here, at least the NICE panel correctly identified the absence of evidence.

Must look for the further pearls they've contributed ----.

*https://www.s4me.info/search/18365136/?q=Husain&t=post&o=date&c[user][0]=455&c[thread]=30906

 

I attend a local MS clinic. Before the pandemic they became enthusiastic about a program called "Overcoming MS" There was a diet, supplements, advice on exercise and so on. Separately, there was NHS stuff where Rona Moss Morris was involved. (Think she is involved in RA as well) Anyway, the whole business was based on the stunning results of the PACE trial and interventions for CFS.

When the psyche people commandeered ME they explicitly stated that CFS is the severe end of a spectrum of fatigue and is all the same. Many, or most, diseases have fatigue as a symptom which often causes more problems in day to day life than the disease itself. The potential for making a fortune by finding a treatment was probably why they were so keen to take over.

Maybe they hate us because it did not work and they are so sure of their theories it had to be us being wilful!

ME, in the days when it was defined, was seen as a discrete category because symptoms came and went, often over the course of a day, rather than, say, a constant joint pain.

And then there was a specific reaction to exertion which is unlike other illnesses. The CFS definition was not developed by examining patients and they added PEM as a minor symptom which may or may not be present and replaced it with fatigue as the main symptom and forgot about it.

When they began to consider it again, too many people said it was about symptoms getting worse with exertion, which is common, and that it could be out of proportion and prolonged, not so common but not nearly the whole story.

With ME, mental exertion can cause physical symptoms and vice versa and these symptoms can be novel and often associated with an activated immune system. So it is not common to get swollen lymph glands from cleaning your teeth even after chemotherapy and less common to get it from reading a book.

The 3 day delay, where you can feel fine for that time then get sicker is also not common.

I just wish more ME researchers would push this.

From this paper, it really makes me angry that the likes of White took a disease which was all about feeling worse on exertion and redefined it unilaterally to a disease of fatigue but are now claiming that PEM is a made up symptom with nothing to do with ME!

 

That link isn't working for me. Is it still active?

 

I think this is what Trish meant, FOI Documents relating to NICE response to the US IOM report on ME/CFS in 2015

 

Thanks, @Andy and @Trish.

Interesting

 

Jonathan's post above -
"I guessed that he [Mujtaba Husain] must have been delegated the job of putting the psych case but not quite realised what he was supposed to do. It must have been tricky trying to say - I know your committee is going to rubbish us but we think all the research is wonderful even if someone is going to say it isn't. But the result seems to indicate a 'lack of communication'.

Presumably he was included in the author list here as deserving at least to get a publication out of his efforts - or just yet again to act as chorus line."

This phrase comes to mind:
"Greater love hath no man than this, that a man lay down his life [substitute - patients/opportunity to advance medical knowledge---] for his friends [substitute colleagues/profession/professional kudos]."

Recall Jonathan describing how he was challenged --- "whose side are you on" --- patients/colleagues!

 

This needs to be considered in the context of the gravy train of long COVID, particularly given the way RECOVER is headed.
CBT research being repeated and history repeating itself .

The NICE review is something that stands in the way of more gravy for all ....