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

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.

 

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.

 

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.

 

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.

 

turns out trying to engage with him was completely pointless.

 

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.

 

I hope it's ok to quote oneself!

This comment has now disappeared from under article.

What a strange world we live in.

 

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.

 

Dr Jarvis may have realised that should he find himself in court that statement would not help his Medical Defence organisation (legal backup) support his case for not being struck off by the GMC.

 

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.

 

Prestigious BMJ promotes ME/CFS misinformation
15th Jul 2023 Katie Johnstone


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.

Some tweetable extracts:

 

Some people might be interested in replying to Prof Michael Sharpe. See linked tweet.

I'm blocked, so Prof Sharpe won't see my comments*
but I can still reply to the thread by replying to Tim Glynn's tweet.

*Though he might use a workaround like I have done given that he saw my initial tweet

 

If I could reply, I'd say, "Sometimes, being able to influence policy that agrees with and promotes your ideology is payment enough, isn't it Prof Sharpe."