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David Tuller - Trial By Error: CBT Provides No Benefits to Advanced Cancer Patients, Study Finds

Discussion in 'Health News and Research unrelated to ME/CFS' started by MSEsperanza, Jan 16, 2020.

  1. rvallee

    rvallee Senior Member (Voting Rights)

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    That was always the direction BPS in general and the MUS ideology was heading for, and very explicitly so. I wonder if people, including those making the decisions, understand this. I think so, but obviously the general public and those who report on this do not understand this important difference.

    Though at least one thing this will accomplish in the end is dismantle ridiculous retorts like Sharpe saying something like "well, you just go ahead and do your own $8M trial if you're unhappy with PACE", since no one will ever be repeating that multi-billion dollar mistake. I have no idea how the architects of this expected the thing that failed every small and medium test would somehow begin to work in a massive implementation in a burning-of-the-boats approach.
     
    Last edited: Jan 17, 2020
  2. rvallee

    rvallee Senior Member (Voting Rights)

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    As much as I think this is largely the case in the wider UK health care sector, there is clearly a belief over the same arguments Eysenck was making about cancer survival being strongly determined by attitude. Wessely is clearly a huge fan of this idea, he called it potentially the most important breakthrough in cancer research in decades at the time, and it's evident that there is generally such a belief within the BPS ranks. The real question is over how much influence it plays, but I don't think there is that clear a distinction between adjunct psychotherapy for LTC and the belief system on which the ME-BPS model is built, that most physical symptoms are an illusion from a disordered mind.

    The opinion that most medical complaints are actually psychosomatic is sometimes voiced with so much certainty and openness that it's clearly not a fringe opinion, as is evident by the belief in the concept of MUS making something like 1/3 of medical consults that are clearly believed to be somatization, whatever that is. (I guess we could call it Freud's demon). We are talking about the default explanation, after all.

    There is a genuine core of belief about real physical powers of the mind over the body. Those ideas may be facing a very unpleasant future, particularly Eysenck's horribly flawed research, but they appear to cary genuine influence in the BPS model, especially in its most prominent NHS influencers. The public message over this isn't very representative of what is used in practice, as is evident by the enormous gap between NICE guidelines on ME and the internal documentation and training within the NHS, which more or less explicitly calls us lazy idiots who just need a stern talking to (and which happens to be the thing used in practice).
     
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  3. rvallee

    rvallee Senior Member (Voting Rights)

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    Especially with someone like Sharpe leading the charge on this, or being a main influencer anyway. There is almost zero chance this will be of use in the context because he and his peers have no capacity for empathy, appear fundamentally incapable of understanding the lived reality of others. This is the exact opposite of the compassionate support that is actually needed.

    Like Charlie Sheen leading a programme for sober living, there's just a fundamental disconnect between the aims and what the people in charge are capable of.
     
  4. rvallee

    rvallee Senior Member (Voting Rights)

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    Works in this context only means changes answers on unreliable questionnaires. That's the whole of it. It "works" only if you allow a definition of work to mean absolutely nothing beyond that. By that same definition homeopathy and astrology "work" and the same methodology used in PACE would conclude the same (as long as you have biased astrologers with conflicts of interest running it, of course).

    I had the realization lately over how this is the same fundamental flaw with the placebo effect, it truly does not exist at all beyond that useless definition of "work", in the sense of having an "effect", just not a useful or relevant one. The placebo effect is "known" to "work" precisely on those unreliable non-specific questionnaire-evaluated concepts of pain, fatigue and anxiety. And it is shown by the same process that "shows" (though pragmatic trials from which this isn't even a valid conclusion) that ME is a psychological disorder.

    It's literally all simply a questionnaire effect meeting various biases and expectations, a cumulative error made of multiple guesstimates. It is effectively the same effect as using an unreliable weighing scale and cherry-picking one direction over another. Except precise measurement is typically the first step in science, here it is entirely skipped by choosing arbitrary measures of little to no relevance and consist of nothing but guesstimates, so we only find it in this weird space of psychology meets medicine.
     
  5. Michelle

    Michelle Senior Member (Voting Rights)

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    Depends on the CBT. Good CBT can simply be about providing you with tools to manage emotional distress. I would think advanced cancer could cause some significant emotional distress.

    Exactly. I had CBT for depression and found it tremendously helpful. Indeed, while I'm sure I would have survived 20 years of being ill--15 years of it (so far) being homebound--I would have suffered even more than I already have without the CBT. Thankfully, I had a great therapist who was upfront with me that she could not fix my (at that time, undiagnosed) somatic symptoms but she could give me some tools to help me manage the psychic suffering it entailed. This is what pisses me off so much about the BPSers: CBT could potentially be a really helpful ADJUNCTIVE tool in coping with ME. But they're greedy sods and insist it can somehow how be a treatment. It can't.
     
  6. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Yes, thanks.

    After also reading Michael Scott's article and the trial paper on CBT for people with depression and advanced cancer I think this is a trial that is specific for the situation in England, but it also raises highly relevant general questions regarding treatment of mental illness in people with severe co-morbidities -- as well as regarding psychological and emotional support for chronically ill people ("long term conditions") who don't have mental health issues.

    I think the trial's findings might not be generalizable for other health care settings because the whole IAPT business seems to be built on wrong premises, hasn't been properly evaluated and maybe also the NICE recommendations (guidelines?) for depression are too undifferentiated for people with severe co-morbidities.

    If I understood properly, the trial paper mainly wants to answer 2 questions:

    1) Is the evidence for benefits from CBT for depression in people with cancer generalizable for advanced cancer?

    The paper clearly says no, in the trial CBT didn't help patients with advanced cancer compared to treatment as usual. But the trial only investigated CBT provided through the IAPT program (with improved conditions)

    2) Has the evidence for benefits from CBT for depression in (advanced) cancer generally been overestimated in previous studies?

    The authors suggest that this is probably the case, and that this may be true for depression in other severe chronic illness too.

    So yes, I can follow the reasoning that the trial adds evidence to the bad news that IAPT isn't helpful for (severe) chronic illness including "MUS" and ME, no matter how the latter are defined. And yes, a short introductorary re-cap of the most relevant already existing evidence what a mess IAPT actually is both for patients and therapists, would have been helpful for me (and probably boring for many others.)

    Regarding MUS, I wasn't aware that there seems to be consensus that they all are associated with depression and anxiety or even to be just physical symptoms of depression and anxiety or interchangeable with the term functional/ psychosomatic/ bodily distress disorders or whatever interchangeable term.

    While I realize that ME diagnosis and treatment in most countries is still being dominated by the view that ME is psychosomatic/ bodily distress, again I wasn't aware that there was a strong consensus that ME = MUS.

    (Edited for clarity.)
     
    Last edited: Jan 18, 2020
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  7. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    I think the NICE terms are "supportive" vs "directive" CBT.

    But even if supportive CBT were offered and even if it were provided in home visits or or by phone or e-mail, if you aren't able to talk much or talk at all, it's understandable to prefer spending the scarce time you're able to communicate with other things than talking therapy (for example communicating with family and friends or people on S4ME.)

    Edited to add:

    How palliative care approaches could be adapted for severely ill pwME with co-morbid ('real') mental health problems (including anxiety and/or depression) would be a discussion for another thread.

    (Haven't read all previous posts so apologies if this has already been said.)
     
    Last edited: Jan 18, 2020
  8. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Not to in any way diminish or question your experience @Michelle, but this brings us back to it being down to the individual therapist and not necessarily the therapy per se.

    CBT, especially the sausage machine kind, delivered by people with some, but not necessarily full, psychology training isn't supposed to depend on which therapist you have for it to work. Did that particular therapist have training and use experience from counselling over and above what is considered standard? CBT doesn't mean the same thing to all therapists.

    Yet it doesn't always. I recently stood by and said nothing when a friend who was struggling to cope with the recent onset of tinnitus decided to go for CBT. She was paying through the nose privately for a guy who was highly recommended and head of his dept. She shelled out over a grand for nothing in her view - no help at all.

    Edited - I stood by because I was worried I might allow what I know about CBT and how it's implemented to put her off looking into something that might actually help. This seemed to me the definition of something CBT should be good at. Knowing now she's a grand poorer I wish I hadn't been so wary of my own risk of being biased.
     
    Last edited: Jan 18, 2020
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  9. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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  10. Michelle

    Michelle Senior Member (Voting Rights)

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    What was she wanting him to help her with? Did she go to this therapist because she was hoping he would help her tinnitus? [Note: I have tinnitus and know that it is usually idiopathic so there are no treatments and that it can be a struggle to learn to live with constant high-pitched sound.]
     
  11. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    You might like to pass on these links to your friend.

    https://www.actiononhearingloss.org.uk/hearing-health/tinnitus/
    https://www.actiononhearingloss.org.uk/shop/tinnitus-products/
    https://www.actiononhearingloss.org.uk/shop/tinnitus-products/tinnitus-relaxers/
    https://www.actiononhearingloss.org.uk/shop/tinnitus-products/pillow-speakers/

    I was taught by my local NHS Audiology Clinic how to use a tinnitus relaxer properly and it worked for me. They must NOT be used to drown out tinnitus. Instead they must be set at a level just below the volume of the tinnitus, so that the sufferer can hear both the tinnitus relaxer and their own tinnitus. Then they must concentrate on the sound from the tinnitus relaxer. Eventually the brain learns to ignore the sound of the tinnitus.

    I paid for my own tinnitus relaxer and pillow speakers, but otherwise the advice was free (in the sense that any NHS treatment is "free").

    Another possibility that costs nothing is for people to make their own sounds with free utilities on the web. Before I bought a tinnitus relaxer I tried out a "proof of concept" with an old walkman I had and sounds I created on this website :

    http://naturesoundsfor.me/

    And other free options - there are loads of very long Youtube videos with nature sounds that go on for 8 - 10 hours. Just search for "nature sounds for sleeping" or something similar, set the volume appropriately, and leave them running all night while you sleep.

    I managed to go from suicidal to coping with my tinnitus within about two weeks, although I kept up the night time sounds for much longer than that - I found them relaxing.
     
  12. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    No, she knew she was stuck with tinnitus. We discussed it a fair bit and she had it properly investigated by ENT etc. who explained it all to her. I developed tinnitus as a young child and was open with her when she asked me about it. She's a very feet on the ground sensible lady and by the time she booked to see a therapist she understood she needed to learn to live with it.

    I should add she is healthy, is an older person who works part time because she loves her job, travels and does a lot of entertaining. Isn't the type to obsess and has plenty of good things in her life to focus on. She has had her fair share of difficulty in life and appreciates her good fortune.

    CBT was suggested to her to teach her to cope/ come to terms with/ accept tinnitus. Nothing more. It was suggested by the NHS as something that might be useful to her. When she discussed it with me before she went she didn't have any unrealistic expectations - I would have said something if she had.

    It seemed to me it was the ideal situation for CBT to work. Even the therapist was very experienced.

    So in an ideal situation it didn't work and cost her a fortune.

    Edited to add - even if she had unrealistic expectations or didn't understand what the therapy could and could not help her with, it should be part of the therapist's job to manage her expectations. Their first encounter should include a chat about why she was there, what she hoped to achieve & how realistic that was.
     
    Last edited: Jan 19, 2020
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  13. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Good info @Arnie Pye :thumbup:. Would you consider putting that in a thread - not suggesting moving it from the discussion, but those useful links and it's would be handy for people to find 'em.

    I went through some of this with her. Like most of us she's learned what she finds useful and she's managing well.

    I think it's telling that she found her brief conversations with a tinnitus sufferer (who was also brain fogged with ME) more valuable than over a grand's worth of CBT delivered by an experienced therapist. Oh and this was done privately so we're not talking IAPT here.

    Please understand, I am not saying CBT never works. I have no evidence to do so. I am saying that even under fairly optimal conditions it still sometimes fails.
     
    Last edited: Jan 19, 2020
  14. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    I copied it to this thread with some small changes and additional info : https://www.s4me.info/threads/how-to-adapt-to-living-with-tinnitus.13270/

    If it is in the wrong thread then perhaps one of the mods could move it somewhere more suitable.
     
  15. Michelle

    Michelle Senior Member (Voting Rights)

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    This. The fact that he didn't is a sort of malpractice. And with regard to the topic of this thread, the IAPT is including a lot of poorly trained therapists who are getting a lot of mixed signals about what CBT can and cannot do. Which is a recipe for a great deal of harm both physically and psychologically.

    I will say that the skills I learned in CBT are skills requiring practice. While it did help me with managing my first long-term relationship in a healthy way -- as well as negotiate with a new therapist when I resumed (or tried to) therapy several years later -- but for depression it was more hit and miss for several years before I really began to hit my groove. It's one of the reasons that I'm unclear how one would actually try to "measure" it as a medical "treatment." Should we do randomized controlled trials of going to confession? While the CBT I received borrowed a lot from Zen Buddhism, I know many Buddhists are horrified at the medicalization of mindfulness meditation. Just like Catholic confession, it's just not what that's for.
     
  16. large donner

    large donner Senior Member (Voting Rights)

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    This is a good point and also that particular "great therapist" may or my not have been considered great by all the other people who saw her.

    Which would then leave unanswered the question as to what ingredient it was, if any, was the one that made her effective in Michelles case.

    We would have to know how many clients she had encountered who had the same issue then had the same claimed positive outcome.

    On top of that we would have to know that it was objectively something the therapist had done that contributed towards that outcome anymore than just talking with a non professional who may be chalk to some people and cheese to others.
     
  17. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I'm not saying he didn't set her.expectations in this case, but if he did he certainly failed to live up to them. She was certainly given enough hope to go back for 8 or 9 sessions.

    The other thing that occurred to me reading @large donner 's post is that the assumption in CBT is that what might be considered to be a healthy pattern of thinking for one person might be unhealthy, unsuited and unnatural to another thus compounding their problems. In addition to any feelings of failure they might feel if they therapy didn't work for them.

    I am reminded of an advanced reading course I took in my late teens. We were all streamed in terms of educational ability & I was in the university stream. I was always quick to grasp new concepts and could absorb large amounts of information easily. Not to boast (I am barely literate now thanks to ME!).

    The school decided to run this advanced reading class and my parents were advised to send me on it. It was mainly run for the top stream of students. Most of the students got something out of it, one or two found it hugely helpful, but it really screwed me up for a bit. I didn't know how or why I was capable of absorbing so much but, in trying to make me think about a different way of processing, the course somehow knocked my confidence and actually reduced my performance.

    So, I wonder if, for some, CBT will simply undermine those who have already instinctively optimised their coping skills, replacing them with something that doesn't work for them and knocking their confidence.
     

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