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

From the article:

"Services are no longer able to provide a full range of evidence-based therapeutic interventions."

I haven't read all the postings so far, but I would say: What full range of therapeutic interventions are they talking about?

There are two interventions - CBT, and GET. That does not constitute a full range.

It's like anyone selling anything, presenting their products as a "full range", when there are only two.
 
'And another article in Pulse Today by Emma Wilkinson: Row reignites on NICE ME/CFS guidance as researchers question process '


One Comment so far in Pulse.

I wonder how many more doctors/GPs have put the 2021 NICE Guideline "straight in the bin". That attitude would explain a lot. Some of us will have been pushing up the daisies for half a century before UK doctors shift from their stubborn attachment to Ignorance Based Opinions (IBO).
 
Dolphin said:
Looks like you can sign up to write such notes on Twitter
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I'd recommend people do sign up for Community Notes.
When writing notes on tweets always write in a neutral tone and provide high quality evidence links. Counter incorrect facts only, do not attack the person or anything that is an opinion, however outrageous - those notes will not end up getting added and your "influence/rank" will go down.

Notes are only made visible to general users after enough people have voted them as helpful. Crucially there needs to be a spread of positive votes from users who would normally be expected to disagree, for a note to get promoted. (The software behind the scenes works out who is likely to disagree with each other based on your previous voting patterns)

Also worth bearing in mind - if you do write a note, don't share it here saying "hey everyone go and upvote this" as that will start to show as a pattern of co-ordinated behaviour and make individuals votes less effective.
 
JellyBabyKid said:
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This makes me feel physically sick.

What happened to going into medicine to help people? Or learning by 'standing on the shoulders of giants?'

The hypocratic oath says "first, do no harm", right? I am thinking doctors should be forced to regularly re take their oath in the same way older folks might need to retake their driving licence to prove they are still safe to hold said licence.
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This idealized version of medicine never existed. It was always what people hoped it would be, but in real life people mostly just do their job as it is required to keep it, never have the big picture or the time and resources to do everything.

It's a lot like the fictionalized version of the past that reactionaries love to depict, how life used to be so simple and good, when in reality what they are thinking of is simply the time when they were children and didn't know about all the bad things that have always happened.

Medicine has been around for millennia, mostly based on clinical experience, and it was only around the turn of the 20th century, with science, that it started doing more good than harm. All these ideologues have is beliefs based on their clinical experience, they have no science, and no science doesn't work in healthcare. The "first do no harm" slogan is just that, a slogan, a feel-good idealized version that doesn't work in real life because the capacity to help everyone still doesn't exist.

I genuinely think that AI will be completely transformative and be able to realize that idealized version of health care, because what's in shortest supply is time, there are simply not enough doctors and clinics and hospitals with the time they need to really solve problems. Most experts will work for months, years even, on projects, with huge oversight and process. Doctors sometimes have to make life-altering decisions in a few minutes, with barely any information, and entirely alone. This is simply not a recipe for success. All experts would fare just as poorly in those conditions.

It's technology that matters in the end, and although technology has started improving the back-end of medicine, it hasn't even begun to be used at the interface where patients are involved. Even after the pandemic we can't even get them to routinely do remote medicine, even though hundreds of millions would benefit from it.
 
Dolphin said:
The commentary has now disappeared for me
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How odd. Still there for me.
In case it disappears again, it says:

The authors of this study are psychiatrists who benefit directly from patients with Chronic Fatigue being labeled mentally ill. The evidence of exercise-induced worsening of CF symptoms is overwhelming and has been widely accepted after multiple large scientific reviews. https://www.npr.org/sections/health-shots/2017/10/02/554369327/for-people-with-chronic-fatigue-syndrome-more-exercise-isnt-better https://www.nice.org.uk/news/article/nice-me-cfs-guideline-outlines-steps-for-better-diagnosis-and-management
____________

Apart from mislabelling ME/CFS as CF, it's a pretty good note.
 
Trish said:
There's also the whole edifice being built in the UK of CBT for every chronic disease, even the ones with clear diagnostic tests. Rona MossMorris and Trudie Chalder are doing trial after trial of CBT for everything chronic, and the whole CBT for MUS edifice is largely based on PACE, as far as I know.

All castles built on sand.
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IAPT, too. That's billions per year. This is now a huge industry, employing thousands. An endless stream of no-effort money without ever having to deliver anything. There's a lot at stake.
 
Adrian said:
The problem is the methodology on all are weak so if NICE has labeled some low quality then others should be as well.
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And it's not just NICE. The German IQWIG did the same, dismissed almost the entire evidence base as too biased to evaluate. And a Dutch one, too, I think? I saw someone mention that recently but don't remember it. I guess it's what lead to the funding that's being misused by Rosmalen?

IQWIG still mostly stuck to the original conclusions, but this is also in addition to the IOM/NAM report, it's adding up. Contrary to Chalder's lie in the Guardian article, their evidence base has been massively diminished since. It's just that reality hasn't factored in, the coyote remains suspend in mid-air until someone points down at the long fall below and gravity decides to do its thing.
 
Trish said:
I wish I had your optimism. They may have no more to say in research journals about NICE, but they, and particularly Wessely, have so much power in the NHS, and BACME is still all over the place, they will go on with their 'rehabilitation' and 'individualised treatment' just as before.

I had hoped that, with retirement reached by several key players, they would go away quietly to cultivate pumpkins or knit cardigans, but it seems to give them more time to defend their reputations at the expense of patients.

I wouldn't be surprised to see a big push in a year or two to get NICE overturned on the basis of a few more trials being published giving 'new evidence' for CBT/GET.
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I agree Trish.
 
DokaGirl said:
From the article:

"Services are no longer able to provide a full range of evidence-based therapeutic interventions."

I haven't read all the postings so far, but I would say: What full range of therapeutic interventions are they talking about?

There are two interventions - CBT, and GET. That does not constitute a full range.

It's like anyone selling anything, presenting their products as a "full range", when there are only two.
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I would go further.. what services exist at all?
Even BACME said things were bleak in 2018.
Now it appears they are mostly crap!
 
Merged thread

ME/CFS: Researchers question credibility of NICE guidance
BMJ 2023; 382 doi: https://doi.org/10.1136/bmj.p1621 (Published 13 July 2023)
Cite this as: BMJ 2023;382:p1621

Elisabeth Mahase

Guidance from the National Institute for Health and Care Excellence (NICE) on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) “deviated from usual scientific standards” and could cause harm, a group of researchers have claimed.

More than 50 international specialists analysed NICE’s 2021 guidance and questioned the evidence underlying the decision to stop recommending graded exercise therapy (GET) and recommending only cognitive behavioural therapy (CBT) for symptom management and distress.1 “The consequences of this are that patients may be denied helpful treatments and therefore risk persistent ill health and disability,” they wrote in the Journal of Neurology, Neurosurgery and Psychiatry.

NICE has vehemently rejected the study’s conclusions, telling The BMJ that it stands by the recommendations outlined in the guidelines....

NICE has said that it will provide a “detailed response to this analysis” soon, but it was “confident that system partners and the ME/CFS community will continue to work together to make sure the important recommendations in our guideline are implemented.”
 
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adambeyoncelowe said:
Do we know how many of these signatories actually directly treat pwME these days? Or have ever?
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Good question. I suspect many have never treated anyone with CBT as they are probably not trained CBT therapists or psychologists who have trained in CBT.

I know one of the signatories to the paper was told in 2005 that GET was not on offer in the CFS therapy service that he referred into (he's an ID doctor). He never listened. The consultant psychologist repeated this to him and medical colleagues ad nauseum. He never listened. He retired. Still believing what he is not trained in, not prepared to believe what people who are trained were telling him. Obtuse.

PW for example is a psychiatrist - unlikely to be trained as a psychotherapist too. Therapy training has not been part of UK mainstream psychiatry training for decades. There are a few exceptions to this.
 
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Copy of tweets
Paul Glasziou@PaulGlasziou
If posting replies/comments on this paper, to help other thread readers can you please: (a) read the paper (b) say which of the 8 items you (dis)agree with (c) post the link for the evidence. Thanks for your kindness.

Sten Helmfrid @StenHelmfrid
Dr. Brian Hughes, professor of psychology at the University of Galway, has summarized the flaws in the paper you co-authored. Please indicate which of the eight items in his rebuttal that you (dis)agree with and post the link for the evidence.
[URL='https://t.co/ufVOo65WXg']thesciencebit.net
Eight (or more) logical fallacies in that paper bemoaning the new NICE guideline for ME/CFS[/URL]
 
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