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

Discussion in '2020 UK NICE ME/CFS Guideline' started by Kalliope, Feb 11, 2022.

  1. Barry

    Barry Senior Member (Voting Rights)

    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.
    Last edited: May 21, 2022
    EzzieD, Hutan, Mithriel and 6 others like this.
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    London, UK
    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.
    sebaaa, lycaena, MSEsperanza and 25 others like this.
  3. Mark Vink

    Mark Vink Established Member (Voting Rights)

    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
    sebaaa, FMMM1, EzzieD and 18 others like this.
  4. Sean

    Sean Moderator Staff Member

    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.
  5. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    betwixt and between
    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


    +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


    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.
    Last edited: Jul 6, 2022
  6. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    betwixt and between
    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.”


    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).
    FMMM1, BrightCandle, Joh and 11 others like this.
  7. cassava7

    cassava7 Senior Member (Voting Rights)

    Did @Jonathan Edwards ever receive a reply to his letter to the authors of this commentary?
    FMMM1 and Peter Trewhitt like this.
  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    London, UK
    Not that I remember.
    RedFox, MEMarge, FMMM1 and 3 others like this.
  9. cassava7

    cassava7 Senior Member (Voting Rights)

    Dr Flottorp was quick to like Paul Garner’s latest tweet on the matter. Shame that she could not pen a reply just as quickly.
    Sean, Peter Trewhitt and bobbler like this.

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