New NICE guideline on chronic fatigue syndrome: more ideology than science? 2022, Flottorp et al

Flottorp et al said:
It is uncontroversial that a diagnosis of CFS/ME
rests upon subjective symptoms. But paradoxically NICE
decided that evidence from clinical trials of CBT and GET
showing improvement in subjective symptoms would
be considered unreliable.
Click to expand...
Paradox? What paradox? There would only be a paradox if it were certain the illness comprised nothing more than the symptoms! That may seem a certainty in the warped BPS heads, but not in the heads of rational thinkers. Diagnostic criteria are not synonymous with illness scope.

The whole point about unblinded trials relying on subjective outcomes, is that they are potentially bias-laden, and hence unreliable. There would only be a paradox if it were known to science, with high statistical confidence, that the subjective symptoms were all that the the illness comprised, and nothing else. But of course that is exactly what these psychiatrists do believe (or in their bubble world, they 'know'). I think it was Wessely who said somewhere that the only illness pwME have, is the belief that they are ill.

Without real scientific confidence that the symptoms are synonymous with the entire illness itself, then all these people arguments are built on sand. The blind arrogance, scientific incompetence, and sheer callousness of these people is just breath taking.

Edit: Writing this, I also just realised the significance of Sharpe's responses on this sort of issue, when he said about the symptoms "that is how the illness is defined". He was saying that the diagnostic symptoms are synonymous the the definition of the illness itself, which is rubbish. Their definition of course.
 
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I think they are confusing two quite different usages of subjective.

There are subjective symptoms - only knowable directly by a subject.

And then there are subjective reports of symptoms - subject to bias.

The problem is the relation between the two.

There is a childlike naivety to their arguments that exposes their complete lack of competence in the area of evidence assessment.
 
That is very true

I don’t think there’s any chance of convincing the CBT fundamentalists, however the hope is that proper scientists are not happy about research where they they label the severely ill as recovered, make endless endpoint changes to get the desired results et cetera
 
Jonathan Edwards said:
I think they are confusing two quite different usages of subjective.

There are subjective symptoms - only knowable directly by a subject.

And then there are subjective reports of symptoms - subject to bias.

The problem is the relation between the two.

There is a childlike naivety to their arguments that exposes their complete lack of competence in the area of evidence assessment.
Click to expand...
They seem to not grasp that it is not just patients' subjectivity that needs to be properly controlled for for, but also the researcher/clinicians' subjectivity.
 
Authors of this Lancet commentary who co-worked with PACE investigators Michael Sharpe and Trudie Chalder in the past --
just results from a quick search:

+ Per Fink +Michael Sharpe

Enhanced care by generalists for functional somatic symptoms and disorders in primary care - Rosendal, M - 2013 | Cochrane Library

https://www.cochranelibrary.com/cds....CD008142.pub2/information#CD008142-sec1-0013


+Knoop +Bleijenberg +Sharpe

Burton C, Knoop H, Popovic N, Sharpe M, Bleijenberg G. Reduced complexity of activity patterns in patients with chronic fatigue syndrome: a case control study. Biopsychosoc Med. 2009 Jun 2;3:7. doi: 10.1186/1751-0759-3-7. PMID: 19490619; PMCID: PMC2697171.

+Knoop +Chalder:

Hughes AM, Hirsch CR, Nikolaus S, Chalder T, Knoop H, Moss-Morris R. Cross-Cultural Study of Information Processing Biases in Chronic Fatigue Syndrome: Comparison of Dutch and UK Chronic Fatigue Patients. Int J Behav Med. 2018 Feb;25(1):49-54. doi: 10.1007/s12529-017-9682-z. PMID: 28836119; PMCID: PMC5803280.

Worm-Smeitink M, Nikolaus S, Goldsmith K, Wiborg J, Ali S, Knoop H, Chalder T. Cognitive behaviour therapy for chronic fatigue syndrome: Differences in treatment outcome between a tertiary treatment centre in the United Kingdom and the Netherlands. J Psychosom Res. 2016 Aug;87:43-9. doi: 10.1016/j.jpsychores.2016.06.006. Epub 2016 Jun 11. PMID: 27411751.


And together with Paul Garner -- the source Flottorp et al refer to by referencing the bmj on the speculations about the resignations from the NICE guideline committee -- another PACE author, Peter White, co-authored a letter to the Guardian claiming that...

"No trials of graded exercise have shown to harm patients, say Dr Alastair Miller, Prof Paul Garner and Prof Peter White, so those with post-Covid fatigue syndrome should not be discouraged from trying it"

Long Covid and graded exercise therapy | Letters | The Guardian, 11.03.2021

https://www.theguardian.com/society/2021/mar/11/long-covid-and-graded-exercise-therapy


Edit:
I misremembered Paul Garner as a co-author of the Lancet commentary by Flottorp et al but he isn't. However, Paul Garner seems to be the main source of the speculations spread by a bmj news article about the motivations of the people who resigned.

And, Garner previously co-authored with Flottorp and others a misleading rapid response to a misleading editorial in the bmj about how NICE applied GRADE in assessing the evidence on GET (thread here , post about authors here)

Both the bmj rapid response about GRADE co-authored by Garner and the bmj news article quoting Garner's speculations are referenced by Flottorp et al in their Lancet commentary.
 
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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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