Facts and Myths about Chronic Fatigue Syndrome, 2022, Per Fink et al. (Danish Medical Journal article)

Firstly - thank you -- great we had people like you on the Guideline Committee

adambeyoncelowe said:
Nah, we acknowledged methodological flaws too. The overall ratings of low and very low for clinical trials required meeting multiple thresholds for crapness.
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Yip pure shit --- noticed the latest trial by Norwegian group incorporated actimetry --- but then some folks design sound experiments and some folks consistently ---

adambeyoncelowe said:
It's just that the BPS people only ever talk about the indirectness thing, because if they had won that argument, it might have allowed some of the low trials to become moderate and the very low to become low.
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Yea for me the indirectness thing just muddies the water --- exactly what the are trying to exploit --- not stupid then, just devious! The trials were crap - generally no objective outcome criteria but if you look at the (withheld) objective outcome criteria, from PACE, then it shows no improvement.

adambeyoncelowe said:
But there would still have been other issues. E.g., cost effectiveness was another issue too. But the GL only has so much space to go into everything.
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Still would have liked the focus on the fact the trials were crap (unblinded and with subjective outcome criteria). I agree with the cost effectiveness argument; if some minor (unobjectively assessed?) benefit is claimed then the cost effective argument can be used to used to challenge that.
I'm still not opposed to supporting people e.g. with some form of counselling - but even that has to be evaluated & it's not a treatment, more a coping strategy.
 
No study that can not hope to provide meaningful results is cost effective.

Rejecting an evaluation tool that could answer a question because it is more expensive than one the is never going to produce unambiguous results is as rational as suggesting the researchers stay in their office and make up data, which on this argument would be even more cost effective, because it would be cheaper.
 
Peter Trewhitt said:
No study that can not hope to provide meaningful results is cost effective.

Rejecting an evaluation tool that could answer a question because it is more expensive than one the is never going to produce unambiguous results is as rational as suggesting the researchers stay in their office and make up data, which on this argument would be even more cost effective, because it would be cheaper.
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Think the cost effectiveness consideration relates to treatment. NICE has an upper threshold so if a very small number of people benefit then it may be that a treatment is not recommended since the benefit fails the cost effectiveness test.
Lets say NICE upper threshold is £40K/year and the treatment costs £400 but less than 1/100 "benefit" from the treatment - fails the NICE cost effectiveness argument.
So lets say they claimed there have been cases of improvement; NICE ran the sums and found it wasn't cost effective.

Apologies may be a bit garbled.

I fully accept that to run research without including readily available objective outcome criteria (Actimetry e.g. FitBit, school attendance, hours worked ----) is inappropriate --- Government research funders should refuse to fund it and ethics committees should refuse approval +++.
 
Sean said:
Funding bodies and ethics committees are as much the problem as anybody. They could stop this nonsense overnight, if they wanted to.
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Yea but we can target Government bodies [NIHR - maybe not right initials] for funding pointless research - as evidence by the NICE Guideline evidence review (page 319 or some such).

EDIT - also, I think folks here managed to get an ethics board refusal (re lightning process) - university in Norway.
So that 2 notable successes for contributors here - OK & more!
 
In case of value, this page can be easier to translate than the pdf: https://web-archive-org.translate.g...uto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

Don't think anyone has yet posted the response to this from
Ola Didrik Saugstad and Susanne la Cour
08/07/2022:

https://dagensmedicin-dk.translate....uto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

And Fink's reply:

https://web-archive-org.translate.g...uto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

They say: "A strong concern about the new NICE guidelines is a misguided user involvement. Patient representatives from the group #MEAction and experts associated with them have been given the decisive say at the expense of the medical evidence (1)."

citing:
  1. Flottorp SAB, K.G.; Fink.P.; Knoop,H.; Wyller,V.B.B. New NICE guideline on CFS/ME: ideology, not science. Invited comment. Lancet. 2022;399.
I've seen others commenting on a claim like this from others: "There was considerable disagreement within the committee, and three prominent members left it in protest against the recommendations."

I'd have liked to see some references for the claims here:

"We agree that the treatment efforts are inadequate in Denmark due to large capacity problems, but the services do not differ significantly from the treatment in other countries. Patients with ME/CFS are treated at the centers for functional disorders. A small group of patients are dismissive of the treatment offer, but it is important to keep in mind that the vast majority of patients would like to be treated with the evidence-based methods we use."

It seems the piece they were replying to said the Cochrane review was withdrawn and corrected: "S&C makes some strong claims that all research into CBT (Cognitive behavioural therapy) and GET (Graded exercise therapy) is of poor quality. However, contrary to C&S's assertion, the Cochrane review by Larun et. al (3) has never been withdrawn and no significant changes have been made to it."

It includes this claim of the Wilshire paper: "The criticism of the PACE study advanced by C&S has been rejected by the authors (4) in all respects, and the re-analysis of the study referred to is manipulation of data."

@Tom Kindlon

They conclude: "We would like to encourage that we work together across disciplines to improve the treatment of CFS/ME, but this does not mean that we must compromise on good scientific and clinical practice."
 
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What exactly is the evidence relied on for the claim that three of the NICE committee resigned in protest against the recommendations? We have never seen any. Oerhaps there is information circulating behind the scenes. If so, it should be made public.

The decision seems to have been made "nem. con.". If three resigned in protest at their own decision perhaps they should not have been on the committee in the first place. There is no reason to believe this to be the case, but the claim that it is is seriously damaging to the reputations of those three.

Is it not conventional in this area of publishing to provide some supporting evidence for a claim of this nature?
 
Esther12 said:
They say: "A strong concern about the new NICE guidelines is a misguided user involvement. Patient representatives from the group #MEAction and experts associated with them have been given the decisive say at the expense of the medical evidence (1)."

citing:
  1. Flottorp SAB, K.G.; Fink.P.; Knoop,H.; Wyller,V.B.B. New NICE guideline on CFS/ME: ideology, not science. Invited comment. Lancet. 2022;399.
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Apologies for cross-posting:

Flottorp, Fink et al reference a bmj article that quotes Paul Garner:
MSEsperanza said:
The quote from Garner in the referenced bmj article:

“These resignations can only mean a critical breakdown in the methods for formulating the recommendations. Normally areas
of disagreement are solved by formal consensus methods, voting, or informally. That is what the panel is for: to agree.

“What is serious is that those resigning are some of the most respected service providers for ME/CFS services in the country. This can only mean that the disagreement is fundamental to care of people with ME/CFS, in terms of what works and about the
balance between health benefits, side effects, and risks of approaches to help people improve and recover.”

There is no evidence for Garner's inference that the committee members resigned because they didnt' agree -- see the NICE guideline minutes:

“The whole guideline was agreed by the committee, including the recommendations on graded exercise therapy (GET) before there were resignations.”

https://www.nice.org.uk/guidance/ng206/documents/minutes-31

See also the account of Adam D.H. Lowe, a patient representative on the guideline committee:

"As it happens, I was on the NICE committee. I was there for the meetings -- where there was a huge level of consensus on most issues right from the beginning, and in the end, there was consensus on the entire guideline. It couldn't have been signed off without it [...] we were painfully transparent (NICE had records of comments I had made under articles, for example, because their COI process was so thorough)."

"Those who left did so after the guideline had been agreed in meetings. They had also signed off the draft guideline the year before, which was very similar. I can't speak for them, but there weren't huge fallings out. People got on and we liked each other. We had a lot in common, and it was only on the precise interpretation and expression of a few issues where we seemed to diverge for a time.

"Even then, we got to a place where everyone in the room was happy and we signed off the guideline together (twice). So it seems disingenuous to portray this as a huge scandal when that wasn't the experience in the room."

Forum post here.

Link to Adam D.H. Lowe's original text here. (Amazon book review).
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chrisb said:
The reference to Garner saying "can only mean" is not evidence of anything other than the opinion of Garner, which is not generally considered significant. It could mean many things.
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Suggestion on better wording of ...
"There is no evidence for Garner's inference that the committee members resigned because they didnt' agree."
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...very welcome.

(Happy to edit my wording if it isn't clear.)
 
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