Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

Many sufferers believe ME/CFS is purely biomedical, whereas some experts think it may be a brain-body disorder.

suffers v. experts
believe v. think
purely v. may be

See how it works? Negative irrational emotional descriptors are applied to us and our arguments. Positive rational considered descriptors are applied to them and their arguments.

Of course, neither do they mention that some other experts don't think it is a brain-body disorder.

Nasty stuff, and completely deliberate. They know what they are doing.

I actually think it's brain-body. Unless I've recently been lobotomized, I'm pretty sure my brain is still attached to my body and affected by the disease. I don't think talking to it helps though. Just as much as I don't think talking to my legs will make me run faster.
 
That's disgraceful. Perhaps warrants a second rapid response pointing this out and quoting the deleted section.
I’m guessing this may be a legal safeguard. The policy seems to be to publish most Rapid Responses but that may mean they err of the side of caution with anything that could be libellous as they don’t have the time to scrutinise or edit in the same way that they would if they were more selective (hence no correction of typos). That’s frustrating in this case but perhaps a price worth paying for getting more responses published online in a short timeframe.

Having said that, I would be surprised if Charles’s comments on COIs weren’t accurate, and I hope he will follow it up with the editors, providing additional references if necessary, as COIs are a big part of the problem.

It’s not inconceivable that Charles’s letter could be published in full in the print edition, as some Rapid Responses are.
 
Dr Shepherd posted the following on Facebook yesterday:

NB: The first part of my letter, which was concentrating on the conflicts of interest by some of the clinicians and researchers who authored this paper, has not been published.

People with ME/CFS welcome the recommendations in the NICE guideline

Dear Editor

The NICE guideline committee (of which I was a member) spent an enormous amount of time over three years reviewing all the evidence on CBT and GET from both clinical trials and from people with ME/CFS.

They concluded that the clinical trial evidence for the use of CBT and GET was of very poor quality and acknowledged that people with ME/CFS have consistently reported that CBT was ineffective and that GET made their condition worse - some ending up in wheelchairs as a result. off receiving harmful advice on activity mansagement.

The ME Association is therefore pleased to see that NICE is robustly defending the new recommendations regarding the use of CBT and the removal of GET and the way in which these recommendations were reached.

These recommendations have been widely welcomed by the ME/CFS patient community here and abroad, and by the vast majority of health professionals who are actively involved in managing people with ME/CFS in both primary and secondary care.

Competing interests: No competing interests
It might have been something like this which was in their press statement.
“It is disappointing but not surprising to find that these doctors and researchers, many of whom have devoted a large part of their professional life to trying to persuade their colleagues that ME/CFS is caused by abnormal illness beliefs and behaviours and can be successfully treated by CBT and graded exercise therapy (GET) are still refusing to accept the recommendations in the 2021 Nice guideline on ME/CFS."

It's probably not that surprising that something like that wouldn't get posted on the BMJ website especially without lots of references. It's not the sort of language one tends to find in medical journals. You generally have to play the ball rather than the man, to use a commonly used phrase.
 
There have been a few exchanges on the commentary with Paul Glaziou on twitter, and sadly he does not appear to be any serious about this at all. I thought he was a bit removed and just taking sides reflexively over the evidence-based medicine angle, but he is the same as the rest of them. Feels exactly like arguing with Sharpe or Wessely, he is borderline trolling and ignores all substantial criticism. He asks for rebuttals, and ignores the ones provided to him.

Looking back at the big picture, behind this are some of the most prominent figures in evidence-based medicine, and especially the area of dealing with the issues that medicine doesn't understand. And even some expert in medical evidence in Paul Garner. And none of these people are capable of having a serious discussion based on facts or reality. They simply ignore everything problematic that they can't dispute, and nitpick on trivial nonsense as if it's all that matters. All of them.

I cannot thank David Tuller enough for sticking with this. But this is really a group of people who work in their own special bubble, impervious to the impact they force onto the world.

It's going to look so bad in hindsight, but history doesn't actually judge people. Semmelweis, who was first to promote the idea of sanitation in health care, did not get his due. And very little has changed since, the same mistakes done for the same reasons and excused with the same hand-waving nonsense.
 
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It's probably not that surprising that something like that wouldn't get posted on the BMJ website especially without lots of references. It's not the sort of language one tends to find in medical journals. You generally have to play the ball rather than the man, to use a commonly used phrase.
Yes, I agree. I hope someone will submit something objective and well-referenced about the COIs that evades censorship as I think it’s really important. It’s not just the declared COIs, it’s the undeclared ones and the reputational damage that they would suffer if they conceded that their research is very low quality and the therapies they have been prescribing and promoting are ineffective and harmful. In many cases they were prescribing and promoting CBT/GET before there had been any studies.

I would do it myself but I’m not well enough atm.
 
Yes, I agree. I hope someone will submit something objective and well-referenced about the COIs that evades censorship as I think it’s really important. It’s not just the declared COIs, it’s the undeclared ones and the reputational damage that they would suffer if they conceded that their research is very low quality and the therapies they have been prescribing and promoting are ineffective and harmful. In many cases they were prescribing and promoting CBT/GET before there had been any studies.

I would do it myself but I’m not well enough atm.
Best of luck to anyone who tries. I think it could be difficult to get through. But I suppose people do have the opportunity to post something like that elsewhere on the internet if they spend time on it and it doesn’t get through.
 
There is one comment from a GP (I think) under this article:

"David Jarvis 13 July, 2023 3:07 pm
Any guideline with ME in the title is going straight in the bin anyway for lack of rigour in using a pseudoscience sounding made up name. With no proven, as yet, pathological process it is by definition a syndrome."

I hope it's ok to quote oneself!

This comment has now disappeared from under article.

What a strange world we live in.
 
"David Jarvis 13 July, 2023 3:07 pm
Any guideline with ME in the title is going straight in the bin anyway for lack of rigour in using a pseudoscience sounding made up name. With no proven, as yet, pathological process it is by definition a syndrome."


An stark example of the reactionary systemic prejudice and violence we have to deal with every day of our lives.

Just proves, yet again, that we are without doubt one of the most despised and abused minorities on the planet. The psychosomatic cult has given licence to the whole profession, and broader society, to dump their contempt and hate on us.

There must be serious formal consequences for medical professionals who indulge in this toxic filth. It is way past the point where it can be brushed off as an isolated example, with a slap on the wrist at worst.
 
Toxic filth is going a bit far. He’s right to dislike the name ME on accuracy and pedantry grounds, and it’s fair enough to call it a syndrome. Ramsay’s Syndrome would be fine as far as I’m concerned.

It's fundamentally a bad faith argument though isn't it. He's using an argument about the condition having a bad name to somehow justify the leap to saying a guideline which could help a real clinically defined group of people shouldn't exist.
 
Toxic filth is going a bit far. He’s right to dislike the name ME on accuracy and pedantry grounds, and it’s fair enough to call it a syndrome. Ramsay’s Syndrome would be fine as far as I’m concerned.
The point about 'toxic filth' is the doctor's declaration that the guideline goes in the bin on the grounds that the name is inaccurate. We still need care, whatever the name of our disease. For a doctor to say the guidelines for our care are rubbish and should not be followed is toxic. He's effectively putting the patients as well as the name in the bin.
 
It's fundamentally a bad faith argument though isn't it. He's using an argument about the condition having a bad name to somehow justify the leap to saying a guideline which could help a real clinically defined group of people shouldn't exist.


It would be a bad faith argument if it was a seriously expressed one, rather than simply a below-the-line howl of pedantic rage. Personally, I’d save my iatrophobic wrath for doctors who tell ME patients to stay active and avoid deconditioning, or who deny them pain relief, or who steer them into psychological therapies.

Jarvis doesn’t say anything explicitly about what he does, or would do, in the absence of taking the guidelines seriously. There is a reasonable suspicion that he is unfriendly, but no actual proof.
 
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The prestigious British Medical Journal (BMJ) has published an article which profoundly misrepresents the state of scientific knowledge on ME/CFS.
https://mecfs-med-ed.org/2023/07/15/prestigious-bmj-promotes-me-cfs-misinformation/

It’s a pity she says they are all psychiatrists which is not correct. Hopefully she will fix that.

I don't like to criticise people who are doing their best to be helpful, but as far as we know the grandly named 'ME/CFS Education Campaign UK' is one individual, Katie Johnstone, who runs a blog. This article is on that blog.
There are, as pointed out above, errors in the blog article, eg:
its authors have built their careers on the notion that treatment for ME/CFS should be rehabilitative, consisting of physiotherapy, exercise and counseling.,
No. Directive CBT is pretty much as far as you can get from counselling in the field of talking therapies, and GET is not 'physiotherapy and exercise'.
There are other errors, but I won't labour the point. I have no problem with people writing blogs. I very occasionally write one myself, but if you are trying to educate medics, it's worth getting your article checked out before you put it on your website.
 
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