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David Tuller: Trial By Error: Steve Brine's Troubling Claim in Parliamentary Debate on ME

Discussion in 'General ME/CFS news' started by Kalliope, Jan 28, 2019.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Norway
    Ron, Dolphin, dangermouse and 38 others like this.
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    Wow they say practice makes perfect and @dave30th has had plenty of practice at shredding shoddy work by BPS proponents but this one is top notch :thumbup:
     
    Ron, Dolphin, dangermouse and 24 others like this.
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    It is neat, as they say over there.
     
    Ron, Liessa, Dolphin and 19 others like this.
  4. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Brilliant once again. I love it.
     
    Ron, Dolphin, dangermouse and 14 others like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

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    I have previously described this as an ouroboros of bullshit but I take it back. It's more appropriate to describe it as a human centipede of delusional bullshit, where some chains in the centipede clearly being occupied by the same people in a reality-breaking symbiosis, maybe some quantum superposition of malice and incompetence.

    I mean, let's separate the steps here:
    1. Group runs a trial
    2. Trial is a failure, even in its own conclusion
    3. Group who ran trial is tasked to build guidelines based on trial that failed
    4. Guidelines are official policy despite everyone involved knowing it is a total failure
    We are beyond malpractice. People need to go to prison for this, this nonsense has to stop.
     
    Ron, dangermouse, TiredSam and 32 others like this.
  6. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @dave30th

    Thank you for exposing this hidden enclave of erroneous theory about ME. Another one!

    And, thank you to members who unearthed this course.

    Some forum members have discussed building a
    free course to counteract the incorrect and misleading
    information in METRIC. That's a great idea.

    This plan aside, the idea that physicians are fed this stuff that they then foist upon very physically ill people is harrowing.
     
    Ron, Liessa, Dolphin and 19 others like this.
  7. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @rvallee

    I like your thinking. We are making headway, but legal action would make 'em sit up and take notice.
     
    Ron, dangermouse, MEMarge and 5 others like this.
  8. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Wonderful! Loved it! Thank you, @dave30th ! :hug:
     
    Ron, Dolphin, dangermouse and 8 others like this.
  9. Trish

    Trish Moderator Staff Member

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    Truly excellent, as usual @dave30th. Thank you.
    Will you be sending this in the form of a letter to Steve Brine and to the RCGP's to ask them to withdraw it?
     
    Ron, dangermouse, MEMarge and 15 others like this.
  10. dave30th

    dave30th Senior Member (Voting Rights)

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    I sent it to Monaghan, Nicky Morgan, Darren Jones and Steve Brine. I am sending it to Professor Chew-Graham seeking response to the post and to her misstatements about cost of MUS. Good idea to call out RCGP as well.
     
    Amw66, Ron, Sarah Restieaux and 48 others like this.
  11. rvallee

    rvallee Senior Member (Voting Rights)

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    It's pretty much inevitable. It's just a question of when the levee breaks. It may be years away, but it will. Once it does there will be much scrambling and throwing dead weight in front of very large double-decker buses. There will be attempts at presenting sacrificial lambs but it won't be good enough. This is rot at the very heart of the institutions of medicine, it's not the kind of thing that happens with the dogged pursuit of a few people, the whole system has to buy in on it and it did.

    I think Monaghan is entirely correct. It seems impossible now but once this explodes it will be a sight to behold. The scandal may not be equal to the AIDS crisis in terms of direct deaths, but the malice may be even worse since this isn't just refusing to do something, it's a deliberate act of sabotage of all efforts at making progress.
     
    Ron, dangermouse, MEMarge and 14 others like this.
  12. dave30th

    dave30th Senior Member (Voting Rights)

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    yeah--this would be shocking in a normal universe. In BPS-world, I guess it's normal.
     
    Ron, Lidia, Liessa and 23 others like this.
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The link to the RCGP site does not work at the moment. I wonder if that is generic or just for this document.

    It really is a disaster that the recent fashion for dumbing down everything in medical education has led to something as bad as this. This comes from a cottage industry that is parasitising UK medicine with RCGP cheering on from the sidelines.
     
    Ron, Liessa, Dolphin and 21 others like this.
  14. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Excellent. This kind of work is exactly what we need.
     
    Ron, dangermouse, MEMarge and 14 others like this.
  15. chrisb

    chrisb Senior Member (Voting Rights)

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    The person holding the post of chairperson of the Council of the RCGP from 2010 to 2013 should perhaps not be overlooked.
     
    Ron, Dolphin, dangermouse and 19 others like this.
  16. Starlight

    Starlight Senior Member (Voting Rights)

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    Thank you so much for this. I'm always so grateful for your role in bringing the truth and illuminating (time after time) what others would keep murky and dark. You are invaluable to ME sufferers everywhere.
    We are so fortunate to have you using your very considerable gifts on our behalf and it is so uplifting to read the truth shining brightly from your writing.
     
    Ron, Dolphin, dangermouse and 16 others like this.
  17. Binkie4

    Binkie4 Senior Member (Voting Rights)

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  18. rvallee

    rvallee Senior Member (Voting Rights)

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    Something I've been thinking for a while but this is declaration of mental incompetence by implication. ME patients are assumed to be mentally confused and as such incapable of making decisions for themselves, as a broad stroke and without even an attempt at making individual assessment, something which screams of bad ethics considering how many patients are misdiagnosed because of the lousy guidelines.

    Normally there is a process to declare someone mentally unfit. There has to be a signature from a professional who certifies "yes, I judge that this person is incapable of making informed decisions about their own medical care". It is a medico-legal process that cannot be bypassed precisely because historically this has been a massive failure and systematically abused.

    But in the case of ME patients it is merely implied and final. No appeal. No signature. No one actually certifies or takes professional responsibility. How can that even be legal? All the weight and force of a declaration of mental incompetence merely implied, without a trace, without accountability, without the ability to appeal.

    This also possibly explains the weird thing about informed consent and ethical approval with the Crawley-BMJ pediatric trials where ethical review was essentially waived off. Are ME patients officially, as a broad population rather than in individual cases, recognized by the NHS as mentally incapable of informed consent and this is why it was waived off?

    This is an ethical loophole that is being exploited in exactly the way the very notion of informed consent and official declaration of mental incompetence exists to avoid. I think the scandal just got ten feet deeper.
     
    Ron, Liessa, Dolphin and 22 others like this.
  19. Hutan

    Hutan Moderator Staff Member

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    Great stuff @dave30th.

    The quote of an RCGP submission saying 'yes, we support shared decision-making, but not for those people with CFS who don't know what's best for them' was particularly gobsmacking. Although a 2012 document, it slaughters the idea being put about that people with ME and parents of children with ME in the UK are freely able to choose to avoid CBT and GET.

    I think it's an important point for people preparing the NICE Guidelines to note. if the beliefs of medical professionals that CFS is unquestionably a 'complex psychological problem' are not directly challenged, very little will change.
     
    ukxmrv, Ron, hinterland and 31 others like this.
  20. dave30th

    dave30th Senior Member (Voting Rights)

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    Brine needs to be put on the spot about this. Assuming he agrees it is not an acceptable approach, he will have to explain why a training program from the organization that endorses it should be praised for addressing "misconceptions" about the illness.
     
    Ron, Sarah Restieaux, Liessa and 30 others like this.

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