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"Quotable quotes on psychosocial CBT in ME/CFS" - compiled by Tate Mitchell

Discussion in 'General ME/CFS News' started by Dolphin, Mar 16, 2012.

  1. Dolphin

    Dolphin Senior Member

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    Posted on Co-Cure https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1203b&L=co-cure&F=&S=&P=14575 this week.


    Note: Included below are some 'Quotable Quotes" on psychosocial 'CBT'
    for ME/CFS. Note that some of these quotes are by individuals who are currently presenting at the UK BACME conference that the patient charity AYME is 'facilitating'.

    link- http://www.miltonkeynes.co.uk/community/ayme-to-make-this-conference-1-3620001
    link- http://www.bacme.info/document_uploads/BACME_Events/BACME2012ConferenceProgrammeJan2012.pdf

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  2. Astrocyte

    Astrocyte

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    Thanks for posting Dolphin.

    All the quotes you have given are from five - ten years ago or from another country. I am saying things are changing at least at Barts. Things are improving in the way that we want them to improve.

    You'll actually see from the link below that the therapy at Barts was excellent. And its exactly the type of therapy that should be offered to patients with this dreadful illness. Why is it that you cant see my experience was valuable and why is it you cant see it might be valuable for others?

    http://forums.phoenixrising.me/showthread.php?16830-Bart-s-Therapy-CBT-but-not-as-we-know-it
     
  3. Enid

    Enid Senior Member

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    Appreciate all the points here (what an ignorant history - quotable quotes - can't erase history). Have a feeling the anti "behaviourists" (like me) are because the history is still very much with us. And in most areas fighting to keep alive as if forming a major role in ME. In the light of science at last we know it most certainly does not. All my aids come from informed medics and researchers (international) shared here on PR. How much better for all to have up to date Docs with research and findings, doing the right testing - treating. Then I would have not missed 12 years out of life big thanks to Rich.
     
  4. Dolphin

    Dolphin Senior Member

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    Firstly, Astrocyte, in case it wasn't clear, I didn't write any of that.

    I may have difficulty believing the significance of your report because, for example, I heard a report of what Peter White said at the BACME conference this week. Among other things, he said clinicians should omit the word pacing from our lexicon.
    GET/graded activity is the way forward.

    Have various things to do. Others may reply.
     
  5. Enid

    Enid Senior Member

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    But we know Dolphin they are out their depth.

    Once told I was imagining all the perfectly obvious collapsing as simply all in the mind I think the tables are turned - quite what is in the psychiatric mind - frankly I would'nt want to know having come across a couple of them.
    .
     
  6. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Kind of puts you in mind of parts of "Catch 22", or Kafka, don't it? :p
    bloody absurd babble-speak!

    Yossarian: "So, in order to be cured of ME, I have to admit to being crazy, it's a delusion.
    But if I get your CBT psycho-babble, it won't help me because ME is a physical disease!"

    ;)
     
  7. Astrocyte

    Astrocyte

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    Hmmm. Well I tend to go with first hand experience, rather than what somebody said, particularly as so many people are so selective about what they hear. And as I've talked a lot about pacing with the therapist I've worked with I'll stick with that for now.

    When the leaflet for the CFS/ME psychology service at Barts omits the word Pacing I will believe you Dolphin. As for now, its still there on their new website.

    But who knows you might be right! Things do change.
     
  8. Dolphin

    Dolphin Senior Member

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    It was in the context of the Peter White talking about the PACE Trial. GET and CBT "beat" (a form of) pacing in it. I don't find the quote hard to believe. Peter White resigned from the CMO report committee in 2001 because it was recommending pacing.

    Which leaflet are you referring to? At the start of graded activity oriented-CBT and GET, they encourage people to stabilise. Perhaps pacing is used in that context as it is in the PACE Trial manuals. Perhaps PDW forgot that in his comments.

    PDW sees the PACE Trial as showing GET and graded activity oriented-CBT are the way forward. That's what he has been saying for over 15 years and that's what he's been saying in recent times. It is very, very hard to believe anything else in terms of his attitudes/views (esp. given what I heard about what he said the conference).
     
  9. Enid

    Enid Senior Member

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    Hope you are keeping with science etc astro - not the usual UK love in.
     
  10. Esther12

    Esther12 Senior Member

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    I'd like to hear recordings of those presentations.

    It wouldn't surprise me at all if the claims being made to other clinicians were quite different to the claims being made to patients in order to manage them.

    It was only a year ago that White was so misrepresenting the efficacy of CBT and GET in the PACE trial, so it would be rather surprising if he had decided that was a terrible mistake to over-promote these approaches to CFS, and that patients deserved to be spoken to honestly instead.
     
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  11. Dolphin

    Dolphin Senior Member

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    Barts are talking about recovery - this is on their website:
     
  12. Enid

    Enid Senior Member

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    Not to their previous lifestyle - don't I know it - now anything more more to offer ??? Little toe in the field of biology/pathologies might aid them. Don't ask me about the muddle the psycho lobby in all it's forms have imposed/seek to hold in their willful ignorance in this not so united kingdom until this claptrap is exposed in the medical establishment.

    One has to ask - has any of them admitted to ignorance clearly available to all - pathologies/treatments (until completely understood) - all they can offer is support ONLY. Don't play games and to the whole of the psychiatric profession ????? you are nuts.

    Physician - heal thyself first and not misguide others. Why the h... I should be thinking about their inadequecies when I was suggested "bonkers" (obviously not) 8 years ago, let them stew.
     
  13. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Unfortunately, Esther, this makes you sound like a White apologist. I believe you have it the wrong way about. He would not speak honestly to patients. It makes sense to meet the patient's own belief system and then take it from there. Even a half-baked psychiatrist would know that you need to get the patient onside before you can begin treatment.

    Why would you naturally assign any change to White as being a change in attitude? More logically to think that any change is a commercial or business decision to change approach. Catch more flies with honey.
     
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  14. Dolphin

    Dolphin Senior Member

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    A similar report, to what I had read, on Peter White's speech can now be seen via: http://forums.phoenixrising.me/show...-short-report-on-Peter-White-s-keynote-report
     
  15. Wildcat

    Wildcat Senior Member

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    Thank You, Dolphin. I am alarmed by the apparent apologism for Barts CFS Service and Peter White - and by the misguided attempts to claim that Peter White and Bart's have "changed".

    .
    RustyJ is quite right to suggest that what Barts psychiatrists (and other Bart's Consultants) say to patients is not what they really think and practice.

    That is why I asked Astrocyte if he/she had actually seen any of the Reports written about them by Peter White and the 'nice therapist' at Barts. Patients who have requested copies of the Medical and Therapy Reports have been shocked at the stunning discrepancies between what those nice doctors and therapists say to the patients in consultations (unwitnessed, so its the patients word against the professional's) and what the professionals write for the Records (that goes into the Patient Medical Records for ever). And the patients have been even more shocked to see how those 'nice' Consultants have so distorted and misprepresented what the patients themselves had said in the Consultations.
    .
     
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  16. Enid

    Enid Senior Member

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    How can they speak of recovery if not full return to previous lifestyle - what claptrap.
     
  17. Wildcat

    Wildcat Senior Member

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    The "not returning to their previous lifestyle" claptrap, means that Barts/Peter White imply that ME is a stress condition, Enid.

    Those phrases are part of the Double Speak of the Barts Psychiatrists and other Consultants. Its sad and very worrying that patients are still so trusting and gullible when faced with such deception.
     
  18. Enid

    Enid Senior Member

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    They call it what their tiny minds like - pathetic with all the now known pathologies (real medicine).
     
  19. oceanblue

    oceanblue Senior Member

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    Not quite sure where to post this but maybe here is the right place:
     
  20. jimells

    jimells Senior Member

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    I'd like to propose a study: Put the people making those statements into a cage and then use pschotherapy to convince them that they are actually on a beach in the south of France. The goal would be to see how long it takes to change their beliefs. They can't leave the cage until their beliefs change.

    I have been seeing a therapist for six months. Last week I asked for my records. For some reason I'm not shocked, but the record is severely distorted, and indicates to me that the therapist has no understanding of chronic illness or me.

    The very first session note states, "will use motivational interviewing to initiate motivation for change in lifestyle... although the client stated his circumstances were "not due to a lack of motivation". So right away she doesn't believe what I told her, and unilaterally decided what changes I need to make in my 'lifestyle', whatever that means. Is 'lifestyle' a code word for 'illness beliefs'? Or perhaps a code word for anti-depressants, which I refuse to take any more?

    The next session note says, "The client reported truly believing that getting on disability would fix all of the troubles in his life." What rubbish. I never made any such statement. Disability would certainly fix my leaky roof, but I've never believed or stated that it fix all of the troubles in my life. That's such a ridiculous claim, how could anyone take it seriously? And yet now it's in my file; it can't be removed. So now I can't submit any of the therapy file as part of my disability claim (now pending for four years!) because it will simply be used as evidence that I'm a malingerer!

    Another note states, "the client appears to be extremely depressed with no desire to help himself". Really? Then why did I go through the trouble of getting myself to the therapy session, or keep fighting with the doctors to get help? 'Cause I have a psychological need to fight with doctors, lawyers, and bill collectors?

    Reading this trash was so upsetting, I had to do it over a period of a few days. I was supposed to read through all of the notes in the presence of the therapist - it's "The Rules". But I couldn't do it; it was too upsetting. So they "allowed" me to take my records home anyway.

    So yes, I highly recommend that people should get a copy of their file, and be prepared to find it highly upsetting.
     

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