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Guardian Article on NICE pause

Discussion in '2020 UK NICE ME/CFS Guideline' started by Jonathan Edwards, Aug 30, 2021.

  1. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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  2. Trish

    Trish Moderator Staff Member

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    Hmm. For me it fails at the first hurdle. Not a single mention of PEM and the consequences of activity.

    And too much attention given to the irrelevant psych versus physical debate which is irrelevant in discussing GET.

    And letting Sharpe get away unchalleged with a pile of misinformation, including this:
    “Why is it then argued that we should believe what the patient says about their symptoms to make the diagnosis – but not believe what they say about their symptoms after treatment? I think there’s a paradox there, and I think if you believe the patient, you believe the patient.”​
    Why wasn't he challenged to explain why stops believing patients when thousands fill in surveys saying GET made them sicker?

    I'm grateful to Jonathan Edwards for making some good points, but they are swamped by BPS misinformation.
     
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  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I agree that the attempt at 'balance' betrays a lack of insight.
    However, I think it is quite good to see Sharpe quoted saying something that all doctors will know is just silly - that you believe the patients when they say they are better (but not when they say they are worse). The irony will shine through.

    Similarly Chalder's remarks will look very lame.

    And the bit about the attometers being too arduous is another giveaway.

    I think the people who need to be swayed at the moment are the silent majority of medics who might stand up to the RCP and say 'hang on, this all looks pretty dodgy to us', we don't see why NICE should be criticised.

    It would be nice if Grover understood the psychology but she seems to have a focus on 'lived experience' which the psychologists are only too happy to manipulate.
     
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  4. Peter

    Peter Senior Member (Voting Rights)

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    Overall ok, but wish the journalist would focus a lot more on the over-diagnosis and wrong ones.

    Why not challenge the quote from White: “we used the best criteria available at the time to recruit patients”. Is that really good enough today? Does that make Pace right for eternity, and does that mean that you’re not supposed to admit the many wrong diagnosis, the lack of quality and so on? Remarkable. Eminence-based bs forever.
     
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  5. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    I find it unfortunate that the debate shifts to whether ME is psychological or physical. Which ends in Chalder saying: "This kind of dualistic thinking – it’s either psychological or physical – is not particularly helpful..."

    The title and headline are also terribly:

    "Withdrawal of planned guidance on ME upsets patients
    Advocating for behavioural approaches means condition has been relegated to a psychological problem, campaigners say."​

    The campaigners are actually patients and their carers and they do no object to behavioural approaches because it would mean that ME is a psychological problem. They mostly do so because many became worse after trying these treatments.
     
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  6. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    The headline should not be that patients are upset but that certain interest groups are sabotaging a NICE guideline that was three years in the making and that said that current treatments are not effective and potentially harmful.
     
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  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I have emailed Grover with the relevant points. I think I had made them when we had a long telephone call about a week ago, but I realise it takes time for things to sink in and I cannot expect to be treated as Moses with the tablets.
     
  8. Sean

    Sean Senior Member (Voting Rights)

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    That would be your criteria, Prof, which wasn't even the best then, let alone now.

    Did you inform Natalie Grover of that relevant conflict of interest?

    Well, you claimed it was the patient group (AfME) involved in that trial that asked for that, but then you told a different story to the trial oversight committee (that it was because actigraphy had not given a positive result in other trials of CBT – a bizarre and illegitimate reason in itself).

    That paragraph is just flatly untrue.

    EDIT: @Lucibee has a good summary of that story.

    Nor any subjective marker.

    For which, after decades of its use and testing, there is still no reliable evidence of efficacy nor safety.

    No, the problem is they don't work, and do harm.

    And how about using the term 'critics' instead of the loaded term 'campaigners'?

    Only in the sense that they claim it is a form of conversion disorder, involving a behavioural component.

    It is when is comes to causation, and hence treatment.
     
    Last edited: Sep 13, 2021
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  9. strategist

    strategist Senior Member (Voting Rights)

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    Someone that expects to cure an illness with psychotherapy sees the illness as 100% psychological.
     
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  10. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Headline in hard copy much better.

    ME guidance ( in red) 250,000 patients in limbo as Nice delays advice.


    edit: no mention of Chalder. Sources- Jonathan Edwards, Charles Shepherd, Michael Sharpe
    edit2: haven't done more than scan the thread but hard copy looks very different. Still unhelpful remarks by Sharpe about believing patients but decent attempt at coverage. Decode ME even gets a mention at the end.
    edit3: full article in post #59.
     
    Last edited: Aug 30, 2021
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  11. Sean

    Sean Senior Member (Voting Rights)

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    Not "medical research bodies".

    Furthermore, that situation is due largely to the likes of Sharpe and Chalder for two reasons:

    First, by using such broad inclusive criteria in their studies leading to the mixing of several different patient groups.

    Second, by discouraging and even blocking adequate biological research, and refusing to either use objective measures or giving them due weight, that might disprove their interpretation.
     
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  12. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    We know Sharpe and Chalder will talk about dualism, so as long as charities keep bringing it up in their press releases, too, it will remain the primary 'debate' in the press.

    Both sides need to stop talking about it, but while it remains advantageous for one side to repeat that argument, the other side at least needs to wise up and shut up.
     
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  13. petrichor

    petrichor Senior Member (Voting Rights)

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    Nobody really seems to understand the ramifications of how the Royal Colleges stopped an independent evidence based guideline after already being given a say in the process. That's not how evidence based medicine is supposed to work.
     
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  14. Peter

    Peter Senior Member (Voting Rights)

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    This.

    It is very demanding to listen to Chalder, not to interact when she puts words that are untrue in patients mouths over and over again. Put a penny in her back, and dualistic blaablaablaa comes out. Best to let her speak to herself. It’s circular and brings absolutely nothing of value.
     
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  15. chrisb

    chrisb Senior Member (Voting Rights)

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    I am quite happy for Chalder and her ilk to keep talking about mind-body dualism. It just shows that they have never got the hang of the idea of category errors.
     
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  16. Levant

    Levant Established Member (Voting Rights)

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    I agree, wouldn't it be best to keep the media dialogue focused on this rather than getting lost in the PACE weeds?
     
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  17. Adrian

    Adrian Administrator Staff Member

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    It starts badly by suggesting that NICE have withdrawn the guidelines which is not true they are paused. So the whole headline for the article is misleading. Also the subheadline picks up on psycological treatments and issues which is again misleading.

     
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  18. Adrian

    Adrian Administrator Staff Member

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    Another misleading comment these are sold by Sharpe and White as curative not to manage symptoms.
     
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  19. Barry

    Barry Senior Member (Voting Rights)

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    I'm afraid I agree.
     
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  20. Adrian

    Adrian Administrator Staff Member

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    A good quote from Sharpe as it suggests that he isn't doesn't have a clule about the potential for reporting bias.
     
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