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United Kingdom: Bath paediatric CFS clinic

Discussion in 'UK clinics and doctors' started by Dx Revision Watch, Aug 22, 2021.

  1. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    This post is copied and following posts moved from this thread:
    NICE pauses publication of updated ME/CFS guideline hours before publication was due - 17th August 2021

    Other threads discussing Dr Hammond:
    Spoonseeker blog: A (Second) Letter to Dr Phil Hammond
    Dr Phil Hammond - Health Revolution tour 2018
    NICE Annual Conference 2019: "Transforming care"
    ________________


    Not a recommendation.


    In this morning's print edition of the Sunday Times (News Review, page 26) and online edition:


    https://www.thetimes.co.uk/article/...ve-got-no-chance-against-long-covid-v7s9hg9dr

    If we can't agree on ME, we've got no chance against long Covid

    We need to stop quibbling over guidelines and treat patients on a case by case basis, says Dr Phil Hammond

    Dr Phil Hammond | Sunday August 22 2021, 12.01am, The Sunday Times

    The publication of guidelines by the National Institute of Health and Care Excellence (Nice) should be a time of hope, and perhaps excitement. We need to know what the best available treatments for any disease are based on meticulous analysis of the evidence from trials and patient testimonies. The most recent guidance for ME/CFS — myalgic encephalomyelitis and chronic fatigue syndrome, my medical specialism — was published 14 years ago. We were due an update last week. It should have been timely — not just for the 250,000 people in the UK suffering the illness, but the million people with the disabling and strikingly similar symptoms of long Covid.

    Alas, Nice paused publication, explaining it had “not been able to produce a guideline that [is supported by all. This suggests patients and professionals don't all agree. So what next?

    I have worked with young people (19 and under) with ME/CFS for a decade...]

    (...)

    We all need to work together and embrace differences pf opinion and strategy. More research and better services are clearly needed. Let's start by publishing the Nice [sic] guidance, even if we don't all agree on all of it...

    ----------------

    I could feel my BP going up when I got to the word "quibbling".
     
    Last edited by a moderator: Aug 24, 2021
    Ash and bobbler like this.
  2. Trish

    Trish Moderator Staff Member

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    Just that subheading makes me cross:
    We're not quibbling, we're asking for treatments based on valid research evidence, not some arrogant doctor making it up as they go along and patronising us with 'doctor knows best'.
     
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  3. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Last edited: Aug 22, 2021
  4. petrichor

    petrichor Senior Member (Voting Rights)

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    At least it's sympathetic to people with ME/CFS, and it calls for the guideline to be published
     
  5. Andy

    Andy Committee Member

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  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Yes, but this case by case argument is becoming seriously pernicious. It allows clinicians to use whatever they like under the guise of 'choice'. Being sympathetic while at the same time making people worse for life is not what is needed.

    It is time that touchy-feely be-nice-to-patients obfuscating was called out for what it is.

    Strangely I don't see reference to case by case on the screenshot?
     
    Last edited: Aug 22, 2021
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  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The science is quite certain Dr Hammond. PACE shows very clearly that CBT and GET either have no effect or such a small effect that they are not cost effective. Moreover, there is significant informal evidence of harm.

    But what I see of his piece otherwise looks OK -are there bad bits later?
     
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  8. petrichor

    petrichor Senior Member (Voting Rights)

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    That makes some sense, his article does read a bit like he's trying to justify non-evidence based treatments under the guise of individualisation. It's such a vague concept that anything could be meant by it. But right now anyone that wants the guideline to be published is miles ahead in integrity to anyone that's stopping the guideline or doesn't want it to be published
     
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  9. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    It misses that it is selected of the Royal Colleges whose "quibbling" has resulted in the delay of publication.
     
    Last edited: Aug 22, 2021
  10. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    What's shown in the Sue Julian Tweet is 25% of the piece.
     
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  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Yes, I agree. Having tried to look at the article it doesn't seem too bad except being wishy washy about let's all compromise if we have different views. I am banging on about the case by case thing because it looks like what might derail the whole business. Although, fortunately, it should have no impact on the formal evidence assessment. There are ways to shift scores up or down if you have evidence but until you have evidence the issue of choice does not arise.
     
  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Is the rest problematic?
    It is if he wants a compromise to suit everyone. That is precisely what we need to avoid.
     
  13. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Give me a few minutes and I'll send you a PM.
     
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  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    From Phil Hammond tweet
    "I suggest that we publish the ⁦@NICEComms⁩ guidance on #MECFS & acknowledge that it’s okay to hold different opinions on the science, particularly when the science is very uncertain. We need more research into ME & Long Covid"

    but the RSPCH (and most likely EC, his boss) wanted the publication stopped(?)

    And as for more research......well yes, but not the kind that the clinic he works at is involved in.
     
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  15. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    You should have a PM now.
     
  16. NelliePledge

    NelliePledge Moderator Staff Member

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    I imagine now it’s a fully complete comprehensive NICE review including public consultation and draft guidelines ie Change vs last minute hissy fit from vested interests via arm twisting of Royal College bigwigs ie status quo, it could be a bit awkward in discussions with Private Eye editorial team if you try to justify sticking with the status quo. Somehow you have to start slipping yourself over to the other side of the fence and hope nobody notices the move.
     
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  17. Kitty

    Kitty Senior Member (Voting Rights)

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    This whole individualised medicine thing is a serious concern.

    Didn't the concept emerge from the possibility of (eventually) predicting which patients are most likely to respond best to a particular cancer therapy, or be at risk of serious side effects from a drug, depending on their genetics, immune profile, or microbiome? Whether or not it's actually feasible, at least the individual concerned is the patient, not the doctor.
     
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  18. Adrian

    Adrian Administrator Staff Member

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    If we go to the idea of doctors basically doing what they want (or following their personal beliefs) which is what they are pushing here we end up in a really bad situation. The question for the colleges is are they just pushing this for ME or is this more of a general policy shift.
     
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  19. Adrian

    Adrian Administrator Staff Member

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    There is talk of personalized medicine but I would see that as very different. It talks about the availability of much more data (such as omics) and then the use of this (in an evidence based way) to select treatments. It isn't about doctors choosing their favourite approach and calling it tailored to the individual.
     
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  20. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    Yes. I’ve sent you the whole article.

    It’s the usual mix of truth, compassion and total nonsense from Hammond, trying to be all things to all people, whilst tacitly [edit: not tactically!] admitting that he intends to ignore the guidleine and the evidence and carry on using his own magic doctor powers to decide how best to treat people (presumably by carrying on using CBT, GET and maybe LP too).
    https://twitter.com/user/status/1429375905303080967
     
    Last edited: Aug 22, 2021
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