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

bobbler said:
Did they ever actually publish the 'pre-bunked' article the same lot pre-published on '8 errors of' which turned out to be their own errors in blagging they were and weren't just things they wished were true?

Because if not I can't help but think this is their weak, eventual attempt at doing what they thought they were going to do with that - that after the pre-bunking they then sat on their hands with and finally decided they were best just doing their usual avoid any detail whatsoever (which will/can be pre- or de- bunk) and just list their names and stomp their feet a lot with blaggy manifesto

I guess their one aim of it being the hope that saying Nice don't know what they were doing (saying it again) will somehow change the world and the facts. Oh and they must have thought it has been too long since they last repeated their advertising mantra of 'saying it 7 times for it to stick' of 'what a shame our only thing we can do professionally now isn't offered, patients will really miss out'.

The sad/ironic [for a bunch of people in 'malingerer ideology studies' directed normally by malingerers at people who aren't malingerers] thing is that if it were any other idle malingerer then anyone would say 'that's your fault for not only insisting on being a one-trick pony in something useless/harmful, but stubbornly choosing to avoid all possible learning or wanting to adapt what you do'. But I guess the pointing and chanting 'whoever smelt it dealt it' card can work for a really long time for some.

then whinging that your outdated 'treatment' and ideology based on 1960s manifesto-level non-science can't continue to gravy-train, money for old rope, name your phrase... even when it harms according to surveys and never had any basis according to the science. Cant' people just walk away satisfied with the spoils they shouldn't have made in the first place?
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Agreed.
But, it's where the money is.
 
Joan Crawford said:
100%

They will not stop. For some of 'them' it is a game. No matter about science, knowledge, decency, reliability, validity or any such thing. It is all about keeping the gravy train on track.

Just change the name they say. No one will notice. CFS or FND. The same to them. Only a few patients will notice and in their eyes they really don't matter.

Overall this is profoundly antisocial, devious and ultimately viciously nasty. Of no benefit to patients at all. An enormous distraction. The results for patients: disbelief, gaslighting, reduced social, practical and financial support. While a few profs and their protégés keep on going. Same old, same old. The MO doesn't shift.
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Exactly.
 
Mark Vink said:
Many have just put their name there to do a favour to their friends because if CBT fails for ME, then they are worried that it will also fail for FND and then their whole world of make belief will come tumbling down.
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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.
 
Peter Trewhitt said:
In this context would it be appropriate to raise with NHS England and the Health Minister that, in addition to concerns about Sir Simon Wessely’s appointment as a non-executive board member when he is co-authoring an attack on NICE, could they also confirm if he is or is not the senior health figure revealed by FOI requests as trying to pressure NICE into diverting from the established guidelines process and to tamper with the agreed final draft, falsifying the results of the evidence review, prior to the ultimate publication. Such behaviour would surely be incompatible with membership of the NHS Board.
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As a senior decision maker should his name be anonymized from documents? Normally individuals privacy is respected until a certain level where people are expected to be accountable for their actions.

I wonder if on his application he put that NICE rated trials he was involved in as low or very low quality?
 
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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The problem is the methodology on all are weak so if NICE has labeled some low quality then others should be as well.
 
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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Knoop and colleagues have also been doing something similar in the Netherlands.
 
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The BMJ: ME/CFS: Researchers question credibility of NICE guidance

by Elisabeth Mahase, paywalled

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.

The institute produced its first CFS/ME guidance in …

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And another article in Pulse Today by Emma Wilkinson: Row reignites on NICE ME/CFS guidance as researchers question process
 
Wyva said:
The BMJ: ME/CFS: Researchers question credibility of NICE guidance

by Elisabeth Mahase, paywalled

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.

The institute produced its first CFS/ME guidance in …

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​
And another article in Pulse Today by Emma Wilkinson: Row reignites on NICE ME/CFS guidance as researchers question process
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Over the years, the BMJ have been good at posting e-letters from ME patients and the like (i.e. non professionals). Before social media there would often be lots and lots of comments. Best to avoid ad hominems and the like.
 
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