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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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    I'm afraid I don't buy that.

    This was in their own newsletter:
    They redefined what normal was to mean >=60 on the SF-36 PF (a ridiculous figure given that you could enter the trial with a better score than that). If they wanted to avoid hype about recovery, they could have simply stuck to earlier figures.

    They have produced studies that got coverage before. I remember all the hype when the Fulcher/White exercise study came out in 1997.

    They could have talked about improvement and left it like that. It was the authors who were the cause of talk of recovery/normal functioning.
    Firestormm, busybee and oceanblue like this.
  2. Astrocyte

    Astrocyte

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    Thanks Dasiymay

    The therapist didnt say why the treatment wouldn't cure me. We didnt talk about her views, we stuck strictly to my stuff and not hers. I've no idea what she thought but in hind sight, I don't think it matters. I have quite clear views on CFS and when we talked about them she listened (and with respect) and said she was not in a position to comment as biology was not her area. That's fair.

    I think if you look at the BACME site it sort of suggests they think this is physical. ___

    A rogue good therapist! :DI love it. I think its very unlikely that my experience at Barts is anomalous (at Barts anyway). I also had an initial assessment with another therapist there who was also very on the ball. THey have four therapists at Barts and they all do mindfulness. Mindfulness in itself brings a certain wisdom to procedures.

    Indeed! In fact, no whiffs of any kind! :mask:

    We did talk about mind body interaction but also I talked about body-mind interaction. And no mention of GET but i would go to a physio for that. Wayback I did receive a booklet on GET though. It does talk about doing less and finding a base-line before trying to increase minutely. I agree I am deconditioned compared to five years ago but doesnt explain why I cannot recondition in the normal way.

    As to your question re PEM. Thats still as much of a problem as always when I over do it, but I am better at coping with it and I come out of it a little faster as a consequence.
    Firestormm likes this.
  3. Astrocyte

    Astrocyte

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    Ah Dolphin, you think they were trying to convince me?

    Having had ME for five years I certainly know the difference between a flare up and a cold.

    Or are you trying to convince me otherwise? ;)
  4. Dolphin

    Dolphin Senior Member

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    I don't know anything about you so can't comment.

    This phenomenon appears to happen in some people who have done CBT/GET and when it was in my head, I thought I would mention it.

    Personally, I'm not sure how to tell the difference between an infection in my throat and the sore throat that seems to be associated with M.E. I remember the doctor kept giving me antibiotics in the year I deteriorated (I wasn't diagnosed) as she kept thinking I had throat infections while I think it was most likely the M.E. I remember the big relapse I had during exams in college (in late May/early June) brought on a very raw sore throat and even a high temperature and flu-like symptoms.
  5. Astrocyte

    Astrocyte

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    Hi Dolphin, Ok now I understand, that puts things in context.
    I also understand the sore throats.

    I have never heard your ME story but I would be very interested to hear it and how it all began, if you're willing to share.
    I wonder if we should have a new thread 'Tell your story. How was it for you?'
  6. Esther12

    Esther12 Senior Member

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    As the quotes Dolphin posted above show, it's pretty difficult to believe that they were genuinely so stupid that they did not realise how misleading the claims that they were making about PACE were. It's pretty difficult to believe that they were not being intentionally deceptive in their description of patients as being 'back to normal'.

    Seeing as White, Wessely, Chalder et al. have done work on the media's representation of CFS, etc, etc, and claim to have a degree of psychosocial expertise, they need to be viewed as remarkably incompetent if we are to go on assuming good faith.

    So they lied about the efficacy of misguided approaches to treating CFS in order to get more money for themselves... for our own good? Do you think that their attempts at building up an alliance with you, and creating the impression that they're on your side etc could have misled you here?

    Do you know where Peter White talked of massive cuts in the NHS? I don't remember that.

    I don't think that misrepresenting reality is necessary politics. I think it's disgusting and manipulative quackery, which stops many CFS patients from being able to trust their own doctors. Do you really think that the claims that they make in their medical papers do not affect the way the CFS patients are treated? By doctors? By insurance companies, the DWP, friends and family?

    No doubt they're uninterested in the psychosocial harm caused by their action though - they can't get paid for that.

    Trying to get more money for the treatments one provides for CFS by misrepresenting their efficacy is just fraud, and should not be tolerated. On top of that, their misrepresentations have a profound affect on the way in which patients are treated - the recent FINE trial provided 'rehabilitation' on a decondtioning model of CFS, and led to therapists viewing patients as "ungrateful bastard who didn't want to get better" http://forums.phoenixrising.me/showthread.php?15431-We-are-b****ards-who-don-t-want-to-get-better.

    If you've been ill for five years, I expect that you will have had many people treat you with disdain because they believe that CFS is a result of deconditioning/fear of exercise/refusal to acknowledge depression - this psychosocial harm is a direct result of the psychosocial claims of people like White, and I think that they should be held accountable for it.

    @ Astrocyte: I'm kind of interested in your views, because you're not denying reality, you just seem unconcerned by it. It's very pragmatic and functional, but it's certainly not how I would want to approach life. To be honest, I think that it's a bad thing and that it makes it easier for those in positions of power to mistreat those in positions of weakness. It also seems to mirror a lot of the things that I dislike about the psychosocial approach to CFS.

    Do you think that the CBT you received had any impact upon your own notions of responsibility? If you heard about Crawley misrepresentations of the efficacy of the treatments she is paid to provide prior to your CBT, do you think that you would have been more upset by it?

    I'm not saying that you've been brainwashed! - and it could well just be that your own ideological preferences are close to those of White, etc. But I have noticed that those with CFS who have found CFS-CBT most helpful to end up with pragmatic notions of morality and responsibility.

    I'm trying to avoid writing with a sense of personal animosity that I do not feel - but I think that I really disagree with some of your value judgements, as you no doubt disagree with mine. Sorry if that means that I come across as being too aggressive - it's an ideological disagreement rather than a personal one, and I'd be interested to see exactly why we disagree.
    taniaaust1 and busybee like this.
  7. Gavman

    Gavman Senior Member

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    Stress uses neurochemicals. Anything that helps you stress less will assist in your wellbeing, CFS or otherwise. There is alot of anti-psychology around here and I'd like to say if anyone tells you that its the be all and end all of your treatment, or that you are psychologically impaired because you have CFS/ME, then they are wrong. When i was a vegetarian and not doing so well, i found i defended it and didn't want to change, not for my health but for "i told you so" etc. Noone has the right to tell you what your CFS is, mostly because noone knows. Or they know one segment that could be the solution.

    CBT or any psychology can be effective for CFS, but plenty of therapists seem to want to push down our throats that its a psychological illness. I lucked out and found therapists who still believed it but didn't try to change my view of it. Only what wasn't working in my life. It's great to hear good responses from therapy, it's helped me drag myself out of my hole and back into the real world when all i wanted was to curl up and die.

    Sounds like a good therapist!
    Googsta likes this.
  8. Enid

    Enid Senior Member

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    Must say any stress I found came from the disbelief (despite measured abnormalities) of the Docs about me - 3 imposed a psycho on me in Accident & Emergency. Strange but welcome reversal - behaviourists caused - behaviourists now trying to rectify. ???? (put their own house in order)
  9. Snow Leopard

    Snow Leopard Senior Member

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    I guess that explains why Richard Horton (Lancet editor) was publicising the PACE study on ABC Radio (Australia). I personally think it is strange for an editor of a busy journal to start talking about a study on an overseas radio show, but he did...
    Googsta and Firestormm like this.
  10. SOC

    SOC Moderator and Senior Member

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    It is certainly not endemic in my field! I firmly deny that "it is endemic in science" to report untruths and half-truths for the purpose of "keeping her clinic open" or other self-serving reasons. Maybe it's endemic in psychology/psychiatry/social sciences; those are not my field and may operate on a different morality than the hard science I am familiar with.

    A paper "...aimed at NHS commissioning and keeping her clinic open. Not at patients" doesn't sound like honest science -- it sounds like Murdoch media, which has absolutely no place in science.

    Are you suggesting that they are throwing proper medical treatment of ME/CFS under the bus in order to save their little psych corner of treatment? That they are doing whatever it takes -- dishonest reporting of data, denial of scientific medical facts -- to save their jobs?
    jace and Firestormm like this.
  11. Enid

    Enid Senior Member

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    It certainly appears there is every attempt to "save this little gang of psyches" (can't come to grips with scientific findings and buried in their own problems of "philosophy" mind/body). I'm off - much more help and information from the real world. Have they heard of it - like simple biology - brains - not mind. Think we've all outgrown Freud. And happily has science. I must ask why promote (happy to hear CBT aided you astro to cope though).
  12. Astrocyte

    Astrocyte

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    I'm not suggesting any of that. I think we've established that the therapy I'm doing at Barts is very useful. In the end the 20 Billion pounds worth of cuts is going to deprive patients of the type of care I've received. And it is good care.

    I do want to see more biomedical research and an exploration of other treatments. But I also value what there is now.

    We have to build on what is good, what is there now and make it better.
    Googsta and Firestormm like this.
  13. Enid

    Enid Senior Member

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    But what is even better is the understanding in the scientific research /findings in this disease - that alone we build on. (I'd imagine everyone else - millions who suffer from).

    What are you trying to imply astrocyte as real research (and enormous medical advances affecting so many diseases take medicine on).
    Sallysblooms likes this.
  14. Astrocyte

    Astrocyte

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    I dont really understand what you're saying Enid. Sorry.
    Googsta likes this.
  15. Enid

    Enid Senior Member

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    Don't worry - we are will get there. Much helped along the way myself. (Happy neighbours - gee a GP who had to admit not bonkers eventually - just SING it is not easy). Above all the real Docs/Researchers - under whom this lot will eventually scuttle or have to change their pathetic ways.

    But great you could find a rare helpmate. It is not the answer - we all know and so should the psychobabblers less capable (intellectually) than I ever was. (What's the day their measure apparently). Stuff them for their utter gutter ignorance.

    Ah and now I will fight for all who have to go through this. You are frankly missing in your desire to promote a possible aid when the whole of science reveals pathologies astounds. You apparently fight for Barts (whatever) I fight for ME - much wider.
  16. Astrocyte

    Astrocyte

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    We will get there Enid. And I'm glad you've found help along the way too. That makes a big difference. :thumbsup:
  17. SOC

    SOC Moderator and Senior Member

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    I understand that you've benefited from your therapy at Barts. The kind of therapy you received can help anyone with a chronic illness. I think it's great that that type of therapy, as opposed to that psychosomatic illness nonsense, is available, finally, in the UK. What I object to is the defense of people like Wesseley and Crawley by claiming that their untruths and half-truths are "the way it is in science." No, that's not the way it is in science. Sorry, that defense does not fly. What they're doing is not normal in science, it is simply the way they're falsifying data to serve their own ends. That is enough for me to have no respect for their methods and highly questionable results.

    I think what people are objecting to is the insistence that only psychotherapy be used for ME/CFS when there are medical therapies available that can vastly improve the physical symptoms of ME/CFS.

    I disagree. It's terrible care for a serious illness. It's pretty pathetic that the best NHS patients can get is "Sorry, we won't do anything for you medically, but we can help you feel better about the fact that we won't do anything for you medically."

    Where are the antivirals and antibacterials? Where are the immune function tests and immune modulators? How about AT testing and physically appropriate activity guidance based on sound scientific research?

    As do we all. :D But there are lots of treatments currently available that are not being given at these so-called "CFS clinics". UK patients are getting psychotherapy in place of currently available medical treatment. They shouldn't have to wait for more research to get antivirals, antibacterials, dysautonomia treatments, pain relief, immune modulators, etc, etc.

    ME/CFS is not an untreatable illness for which all there is to offer is "learning to live with it." Teaching coping strategies should be secondary to providing appropriate medical treatment, not the only treatment available.

    Those trying to keep their psychotherapy clinics open are doing so at the expense of patients who need medical treatment. They are doing so by denying that medical treatment is available, and even that medical treatment is appropriate. That is not helping the patients, it is sacrificing them on the self-serving altar of the psych lobby.
    Wildcat, Dolphin, RustyJ and 3 others like this.
  18. Astrocyte

    Astrocyte

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    I'd definitely like to see immune function test. There is a battery of tests done so you get some immune function details but not the really in depth stuff. That would be good.

    Pain and sleep medication is offered. Andy maybe some for OI depending on what its caused by. Eventually I'll get to answering your hypermobility question from another thread.

    Can you tell me which antivirals and antibacterials and immune modulators are approved for use with CFS? In the US by the FDA? And have they been approved in the UK? They'd need large trials before being accepted by the NHS. Are you in the US SOC? I'd respectfully suggest you dont really understand how the NHS works.

    What treatment are you getting if you dont mind me asking?


    I dont think there would be such great research attempts going on in the US at the moment if there were already effective treatments would there?
  19. Esther12

    Esther12 Senior Member

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    With CFS, it would be better to destroy what is bad, and that includes those quacks who believe it is acceptable to misrepresent the efficacy of their treatments for CFS.

    I'm pleased that you found some therapy at Barts helpful, but I don't think that makes the false statements that have been made about CFS or their ability to treat it any more acceptable - it would be wonderful if people like White were no longer taking money meant to help us, and using it to promote misleading claims, even if such a cutback meant that patients had to do their own reading on mindfulness, or miss out on the therapy you found helpful.

    I'd rather have no money spent on CFS than have funding be misappropriated by those who need to lie about their own efficacy in order to take money from more legitimate medical services. I think that White et al. have done more harm than good to CFS patients, and that their continued presence in the field, sucking up resources, is an entirely bad thing. The truth should matter, and their pragmatic disinterest in it is morally repulsive.
    Dolphin and jace like this.
  20. SOC

    SOC Moderator and Senior Member

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    None, as far as I know. They are approved for herpesvirus infections and many bacterial infections, which the majority of PWME have to some degree or another. So PWME can get those treatments in the US. They're not cures, they're not perfect, and they're not always easy to get, but they are available.

    I don't know for sure, but I doubt it.


    Yes, I'm in the US. I completely agree that I don't really understand how the NHS works. :D That doesn't change my argument, though.

    ETA: Astrocyte asked for the details of my treatment and I provided them in this post, hoping to generate some discussion about medical treatments that could be available at CFS clinics in addition to psychotherapy. I asked Astrocyte to reciprocate with the details of his/her treatment, which seemed fair after Astrocyte asked for my personal details. Unfortunately, s/he neither reciprocated, nor responded, so I have removed my personal details from this thread.

    There's a big difference between symptomatic treatment and a cure. Current treatment is far from 100% effective, but it's better than nothing. Research continues because symptomatic treatment is far from treating the illness itself. So, yes, there would be such great research attempts going on because we know next to nothing about this illness, how to treat it consistently, or even how to give patients the best functionality possible.

    There's not a cure, nor is there a known single treatment that will make all PWME fully or even mostly functional. It's still a patched-together treatment based on symptoms and co-infections. There's still a lot we don't know about ME/CFS and we need the research to learn more about this illness, what is causing it and to get more reliable and widely accepted treatments -- or even a cure. That doesn't mean patients should be required to sit around getting minimal medical treatment for symptoms and co-infections while all the funding goes to psychotherapy to help them learn to live with illness.

    Remember HIV? They had treatments that improved the quality of life and duration of life of patients before they knew what caused AIDS. They got antivirals, antibiotics, antifungals, immune modulators and lots of other treatments, but those treatments were far from perfect -- just like us now,eh? It wasn't until massive amounts of research into the illness was done that they discovered the retrovirus and subsequently antiretrovirals that are the uniform treatment that make most US HIV patients "hale and hearty" as Dr Klimas put it. So of course research continues even if there is some symptomatic treatment available.

    Where would we be if the only treatment for HIV patients was counselling to learn to live (or die, in their case) with their illness? What would have been the consequences if all the research funding was spent on psychotherapy? What would have happened if the only HIV clinics provided counselling, not medical treatment? Sounds ridiculous, doesn't it?

    PS Can I ask what medical treatment you're getting, in addition to your psychotherapy?
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