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Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Barry, Jul 30, 2018.

  1. Barry

    Barry Senior Member (Voting Rights)

    A licensed drug presumably/hopefully has to conform to a strict specification of what it is, and what variations from nominal are allowable for it to still be marketable and prescribable as that drug. If some company attempted to market something significantly different from that drug under the same name/description, then surely that would be illegal.

    This should surely be the same for treatments that are pushed as if they are the same, such as CBT. Yet as we know, CBT applied in PACE, and pushed out across the world for PwME, is very different, yet its 'pushers' are more than happy to let the myth persist it is the same as normal CBT. At the very least it is unethical, but is there any way it could be construed illegal, or at least violating some medical practice code in doing that? It just seems like an absurd con trick, that if you take the drug analogy, would be just that. If you were to buy aspirins and they were not, then surely that would be sanctionable?

    @Jonathan Edwards, @dave30th, et al ?
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    London, UK
    Yes, Simon Wessely has expressed a similar, if not identical, concern. He worries that people who have not been trained at King's will not deliver the proper ME CBT. But the only quality control study I can remember compared King's with a Dutch centre, if I remember rightly, and King's was not so good!

    The counter-argument to that is that of course at least they are all trying to do ME CBT - brainwashing out unhelpful beliefs. And you can only do your best. It would be hard to stop surgeons whose stitching was not of Burberry standard doing appendicectomies in the middle of the night because they were not quite so good at it.

    The issue of ME CBT not being CBT is certainly more clear cut. It is not even trying to be the same. But then the pushers would perhaps not claim that.

    It reminds me a bit of watching a fire brigade team in Switzerland trying to get a cow out of a swimming pool sized vat of manure sludge. They tried a neck harness, a belly harness, a JCB, and goodness knows what. They had got nowhere after half an hour. Tackling CBT seems a bit similar. The obvious solution is to dynamite the sludge vat, but the mess could be serious.
    Squeezy, alktipping, Barry and 8 others like this.
  3. Inara

    Inara Senior Member (Voting Rights)

    @Barry, I see the following possibilities which need to be translated to UK/US/the others because this is a view from Germany:

    The law (and the code for doctors) says that the doctor must elucidate about diagnostics, treatments and so on, and he must document that he did that (!). This includes the details about the treatment.

    In case of CBT this means explaining what CBT is, what it aims at and what will happen. You should document that, too. If in your first sessions you realize, hey, that's not what the therapist/doctor said CBT is, you should say that clearly to the therapist. S/He should explain. If s/he sticks to the "wrong" CBT it's time to leave. Please note if you stay or say nothing this could be interpreted as approval.

    I see two possibilities: duty of explaining not fulfilled (what about fraud? which would need the proof of intent - very difficult in general) -> lawsuit "medical error"*, and/or complaint to the Medical Chamber.

    *If the documentation is missing this could be a reason for reversal of burden of proof which means the doctor has to show he did everything right which is as difficult as showing that the doctor did something wrong, so this would be welcome because it could lead to you winning the case. There is a lack of precedences in Germany because the law is from 2014.

    You would have to search for verdicts to learn if someone filed a lawsuit in the past. This would help your case. I didn't do it for UK, so I can't say how successful this would be or if it is possible.

    It would be positive for the ME community if such things were made public I think.
    alktipping, cyclamen, mango and 3 others like this.
  4. Barry

    Barry Senior Member (Voting Rights)

    To me it feels like using the same plain 'CBT' label for so many variants is doomed to be misleading. I suppose the complexity comes when it may be argued that the fundamental treatment is the same (correcting false beliefs), but being applied to many different problems, some of which validly need false beliefs to be corrected, whereas others very definitely do not. Maybe akin to how the same drugs (e.g. aspirin) can be used for many different conditions, and it is then down to the validity of its application.

    As you can tell from the above, I'm confusing myself and chasing my tail. But it just feels like something is very wrong.
  5. Wonko

    Wonko Senior Member (Voting Rights)

    There's a reason for that feeling, something IS very wrong, in many senses of the word 'wrong' (IMO).
    Squeezy, alktipping, Inara and 2 others like this.

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