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Bart's Therapy: CBT but not as we know it

Discussion in 'General ME/CFS News' started by Astrocyte, Mar 13, 2012.

  1. Dolphin

    Dolphin Senior Member

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    It doesn't sound to me like you have recovered by what I and many others and what others would consider recovery.
    I make no apologies for wanting more than that from medicine.

    Earlier in this thread, you blamed the media for hyping the results of the PACE Trial with regard to recovery and the like. You claimed that Barts have changed.

    I pointed out http://forums.phoenixrising.me/show...-as-we-know-it&p=247545&viewfull=1#post247545 what the PACE Trial newsletter said and what Trudie Chalder was quoted as saying.

    I have now shown what is actually on the Barts website at the moment

    This is inline with what is in the CBT and GET manuals for the PACE Trial. "CFS/ME" is reversible.

    I might reply to some of the other parts of your post again. I have more important and urgent things to do at the moment.
     
  2. Astrocyte

    Astrocyte

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    The point is that regardless of the pace manual or anything else, the psychologists at Bart's are helping now. They are helping people cope.
    When I get down to the gym I'll let you know. ;)
     
  3. maryb

    maryb iherb code TAK122

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    quote 'When I get down to the gym I'll let you know'

    I think that is very insensitive knowing how many people on this forum alone are very sick and in no doubt CBT/GET would be of no help at all to them.
     
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  4. Astrocyte

    Astrocyte

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    Maryb, I was being ironic.
     
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  5. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Actually, most of us do not have a choice, either being assigned psychologists by the state, threatened with pensions being cut off. Not sure about your history, but many patients have gone from specialists to so-called specialist, in a fruitless search for a not so crummy health professional.

    Also, my remarks about victims were not directed at patients (particularly not Val), but at the practitioners who regard us as "victims". Odd that you would take it that way. Val had the smarts enough to realize what was going on, all by herself, despite her illness. Rather than be patronizing about having a choice, I empathize with Val, wanting to believe a professional who seems to be understanding. It can take a long time to realize that is just a veneer, because most of us have a desperate need for any treatment that might help.
     
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  6. Esther12

    Esther12 Senior Member

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    It's as if you've only just realised the problems with anecdotal evidence. The posts from MSE were only two years old, and I don't think they should be seen as any more or less valid than your own descriptions of your experiences. They're not contradictory, and together help build a more rounded picture of White's approach to CFS patients.


    It depends what you mean by 'respect' and 'competent'. To me, White's willingness to manipulate the presentation of the results from PACE would require a level of disdain for patients, or at the very least a self-serving disinterest in their right to be provided with accurate information. Anyone who was both respectful of patients and competent would have spoken out against the way in which the results from PACE have been manipulated as soon as they became aware of them. As far as I'm aware, none of White's colleagues at Bart's have done so.

    Given your own disinterest in the published work of White and his colleagues, and have attempt to defend him through anecdotal evidence, it's slightly embarrassing to watch you criticise Dolphin for spreading information from the internet. I, and many others, have anecdotal evidence of the way in which the false and misleading claims promoted by White et al. have led to mistreatment by GPs, CFS specialist centres, socially, with the DWP (for whom White is an advisor), with insurance companies (for whom White is an advisor)... but these anecdotes are of only limited value for understanding how CFS is treated and why.

    If you want to try to defend the way in which patients were classed as 'back to normal' following treatments in PACE, or the even more serious way in which Crawley spun their results to NHS commissioners in her recent paper, then that would be interesting. If you're just telling us that you had a lovely time chatting with White, and he was oh so charming, so we should forgive and forget his history of quackery, then I do not see why you would expect this tale to be seen as any more important than one from a patient who really loves their local crystal healer: 'Sure, they make some dodgy claims about their ability to help people in order to take funding, but they are so good at making me feel lovely about myself.'

    Most people who have read about the approach to CBT taken by White will know that therapists will want to appear likeable to patients, build a sense of collaboration, a belief that the patient's symptoms are being taken seriously, etc. This isn't shocking news. However many of us have no interest in working with those who are willing to misrepresent data, make false claims about CFS, promote misguided notions to other doctors, medicalise and manage the cognitions of patients on pragmatic grounds... even if they are excellent at appearing sympathetic in a consulting room. There is a difference between science and clinical practice, but it is you rather than Dolphin who seems confused about this. The poor and misleading science matters more than the clinical practice that tries so hard to seem caring. The science will have more of an impact upon patients, in a wider range of ways, and over a longer period, than White acting concerned about your health before he pops off to BACME to exaggerate the benefits of CBT/GET for CFS.

    I'm pleased that you think you are more able to contribute something to your fellow human beings and local community, but I'd like to suggest that you try to think a bit more seriously about what responsibilities we have to one another, to communicating accurately and clearly, and to engaging in an honest pursuit of truth. If you devote your greater functionality to defending those who are happy to manipulate and mislead people about CFS and their ability to treat it, then you could end up like them, doing more harm than good. If you want to achieve something worthwhile, then get talk to White about providing the results from PACE in the manner laid out in their published protocol rather than according to his later manipulations. Or make it clear that actometer readings, or some other measure of disability level less easily distorted by response bias should be used when assessing the value of treatments for CFS. Try to get White to do better and more honest science, rather than trying to get CFS patients to feel happier about the quackery we're currently stuck with.
     
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  7. maryb

    maryb iherb code TAK122

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    I don't appreciate your irony, its just too serious an issue for me.
     
  8. FancyMyBlood

    FancyMyBlood Senior Member

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    Well, CFS is a heterogeneous condition so I'm not really suprised some people feel better after CBT. This is why proper subset guidelines are so important, so we can differentiate between different subsets (whatever it may be). Even Peter White agrees there are different subsets, but instead of trying to look at a different pathophysiological causes he's trying to tout CBT as the ultimate treatment without a cause. While I have no personal vendetta against Peter White it's obvious these statements are very harmful for patients who don't benefit from CBT. It has and will divert biomedical funding into the psychosomatic camp.

    Now, I've done CBT and it had no effect whatsoever. It wasn't a bad therapist either. Much like Astrocyte's therapist she was very compassionate and I've never had a discussion with her about different insights about my illness. I believe it's important to note that I wasn't sceptical at all about CBT or the psychosomatic hypothesis. At the time I had no idea what ME/CFS really was and I really believed CBT would help me feel better. But again, it had no effect at all.

    Astrocyte, I hope you don't take any offense but have you ever considered maybe your CFS does have a psychological component to it, hence the improvement on your illness?
     
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  9. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Astrocyte, this is a logical assumption (my bolding). Furthermore, it is also reasonable to suggest that most of your condition may be psychogical, and until there is that recognition, you may not have full recovery.
     
  10. Esther12

    Esther12 Senior Member

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    Personally, I expect that all fatigue, and all subjective experience of illness, has a 'psychological component' to it. That does nothing to legitimise the way in which CFS has been dealt with by White and his colleagues.

    All of us could benefit from certain types of therapy, as I expect that all of us behave in sub-optimal ways, or suffer from cognitive distortions. That doesn't mean that it makes sense to medicalise the cognitions of all those with CFS, any more than it makes sense to medicalise the cognitions of all gays. All of us could also be harmed by therapy performed by those making false assumptions, or with an inaccurate view of their own efficacy. Hopefully the therapy Astrocyte received genuinely helped them to deal with being in a difficult situation, and led to real improvements in their ability to engage honestly with reality, and I see no reason to believe that this means Astrocyte's fatigue was any more 'psychological' in nature than anyone else's.

    I think that some of Astrocyte's posts are poorly thought through and argued, but I don't think it's fair to make any particular assumptions about Astrocyte or the nature of their illness just because they found CBT to be helpful. We've seen how some people have tried to psychologise and delegitimise patients who feel that the psychosocial approach to CFS has been harmful, and we should take care not to behave similarly to a patient who feels that the psychosocial approach to CFS has been helpful (if that's what Astrocyte thinks, I'm still not entirely clear).
     
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  11. Vitalic

    Vitalic Senior Member

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    That is the conclusion I've come to as well. I don't understand how they can on one hand acknowledge we may be dealing with multiple illnesses but on the other hand (the one presented to the public, media and research community) portray CFS as a unified disorder that can be cured by talking therapies.
     
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  12. alex3619

    alex3619 Senior Member

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    One word answer: Magic.
     
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  13. Vitalic

    Vitalic Senior Member

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    There is something miraculous about it that's for sure. Although I'm honestly not sure that it's pre-meditated or driven by ulterior motives in most cases, the NICE practitioner who I was referred to was quite up to scratch with the latest research, yet when we were discussing the phenomenon of viral like outbreaks and the history of the disease they mentioned that it's been around for centuries and that is was originally called neurasthenia. At the time I hadn't heard of this but looking back I can see that it's representative of the problem, to equate ME with neurasthenia shows either a complete ignorance of the field they are working in or some kind of perverse compartmentalisation that allows them to ignore the facts in a similar way to the geologist Kurt Wise for example, who has a Harvard education in Geology yet maintains the view of a young earth creationist.

    I haven't read this thread in its entirety but it appears to be illustrative of the point I was trying to make in a recent discussion, people here seem to want to deny that anyone has had genuine improvement from pyschotherapy which to me seems just as irrational as the positions held by advocates of the biopsychosocial model. It may not even be a spectrum of illness with different subsets that we are dealing with, but actual distinct illnesses with different pathophysiologies and different biomarkers, in which case its very easy to see why some people respond to these interventions and others don't. I can't see this situation changing any time soon though, neither side is going to give up any ground so it's just going to be a constant war of attrition. I guess all we can hope for is something groundbreaking coming out of the current research efforts, something that would allow us to drive a wedge into the ground and start separating the wastebin diagnosis of CFS into actual diseases.
     
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  14. Snow Leopard

    Snow Leopard Senior Member

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    Perhaps. But it is a big mistake to assume that because someone reports improving significantly after CBT or GET that their condition was primarily due to distorted cognitions or inactivity.

    There is a difference between reporting substantial improvements and actually experiencing improvement. The latter involves maintaining a much higher/normal level of activity EG. working full time, doing a reasonable level of exercise without symptoms. There is also a difference between a controlled comparison and anecdotal reports of improvement - you don't know whether the improvement was due to another reason, even spontaneous recovery.

    There are those out there who do have psychological comorbidity and these people will be helped by CBT, but the point is that these people
    (a) are still unlikely to fully recover as a result
    (b) instead of assuming that CBT is useful for everyone, certain psychiatrists should actually try to predict before hand which individuals are most likely to gain substantial benefit.

    If those conducting trials were more honest, they would explicitly state these facts. This would reduce both the stigma of the intervention as well as reduce the stigma of the disease being having CBT as an 'evidence based' treatment. The second point will save the government/insurance a substantial amount of money on not providing the therapy for those who will not benefit.
     
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  15. Valentijn

    Valentijn Activity Level: 3

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    This is a very important point. There has been a lot of research showing subjective improvement, but nothing to indicate objective improvement while taking PEM into account. In the Netherlands specifically, bad-CBT research has resulted in people saying they feel recovered/improved, while actometers show no improvement.

    The danger arises because this bad-CBT is specifically aimed at getting the ME patient to reject the patient label, and accept that only they can cure themselves (with professional guidance of course). And it catches people unaware (even me, after everything I've read here about bad-CBT and Nijmegen research), because the therapists are supposed to lie about their view of their disease and what they're really trying to do, in order for it to ultimately be effective.

    While it is possible that Astrocyte's psychologist will continue practicing only good-CBT, the problem is that you really don't know if/when a psychologist will start slipping in little comments to encourage you to become more active, to discourage your inactivity, to make you think you aren't a patient (ergo not sick), and to get you to become more independent by rejecting assistance in the form of walking aids or helpful relatives. And it's pretty devastating when you start to hear those sorts of things from someone that you've begun to trust.

    That leads to a nasty side effect of being hit with bad-CBT: How can I ever trust a psychologist enough to talk honestly about my M.E. related problems again, knowing that the bad-CBT manual tells them to lie and pretend they're practicing good-CBT? I don't think we can ever know if it's good-CBT or bad-CBT until the treatment is finished ... But finding out would involve risking a repeat of yesterday's experience, and I don't want to do that again, EVER.
     
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  16. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Val, Snow, I was being ironic. I was trying to point out that Astrocyte's logic is a very slippery slope, but if she followed her own logic that is where it would take her. Sorry, probably a bit too obtuse. I needed irony smiley.
     
  17. Enid

    Enid Senior Member

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    Oh the magic of talking therapy - pity it doesn't work. At worst dangerous as we know in the UK.

    I recall Gerada (Royal College GPs - if anyone cares to look) getting things right at an incident with a collapse whilst on holiday with the family - the Docs present each attended to their own understanding/speciality - and the psychiatist present only to support the distraught husband.

    But will they learn their limitations.
     
  18. SOC

    SOC Senior Member

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    I don't agree that this community is anti-psychotherapy.

    Most of us have had some form of psychotherapy and many of us have benefited in some way from it. This has been reported multiple times in this community. What this community is anti-, in my opinion, is the false illness belief based therapies, therapies that require lying to patients, and therapies that push patients to deny their own (correct) sense that something is physically wrong.

    My concerns about Astrocyte's position are not about the value of psychotherapy. My concern is about the attitude exemplified by the following quotes.

    If this were the case, why aren't these "misrepresented" psychologists and psychiatrists speaking up about the misrepresentation of their views? Instead, they are publicly supporting the view that the media is presenting. They are blaming the patients for objecting to their views, not claiming the media misrepresented them.

    This acceptance of their "spinning" their results is disturbing. It condones a lack of scientific integrity. The claim that this is endemic in science (and implication that it is therefore somehow acceptable) is simply untrue.

    This is not about whether psychotherapy can benefit some patients with ME, it's about the standard of scientific integrity used by the supporters of psychotherapy as the primary (or only) treatment for ME.

    So it is acceptable to falsify scientific papers for the purpose of maintaining funding for your clinic? It's okay to tell the funding people one thing and patients another? The goal should not be keeping the clinic open (eg saving your job); it should be getting the best possible treatment for patients.

    How do massive cuts to their budget justify providing false information about the efficacy of their treatment? Is this some "the end justifies the means" argument? It's okay to bend, spin, and mutilate the truth in order to keep your clinic open?

    Seriously?

    CBT is available all over the place. Patients can get CBT without the CFS clinics. The "spin" (or more honestly, misrepresentation) of their scientific data benefits only them. And it's unethical, whoever it benefits.
     
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  19. Snow Leopard

    Snow Leopard Senior Member

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    Right. Spin is never justified.
     
  20. Sean

    Sean Senior Member

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    Exactly. And what this debate is all about.
     
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