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SMILE - Lightening Process - Trial Feasibility Study Published

Discussion in 'Latest ME/CFS Research' started by Firestormm, Dec 6, 2013.

  1. user9876

    user9876 Senior Member

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    I once saw a hypnotism act where the hypnotist said there is no such thing he just works on the basis of suggestion and social pressure. Some people responded very well others less well. It would be interesting to compare this and the spread of results to the spread of results in answering subjective questionnaires.

    I'm not sure it is right to call this a controlled trial as there is no control for the expectations of the treatment.
    Bob likes this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Wouldnt it be interesting to get the kids to do the 2 day exercise test and measure cytokine patterns afterwards as well as an nk function test and then do the same testing after the 3 day LP course so we can see that they have changed their physiology and are cured??
    Keela Too, Valentijn, Bob and 3 others like this.
  3. user9876

    user9876 Senior Member

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    No especially if they may feel they have to take part in a trial.
    I worry about the 2 day exercise test and the effect it could have on someones health. I can see the value from a research perspective but I think participants should understand the potential effects and be willing and also feel able to refuse.
    Bob, Dolphin, Simon and 1 other person like this.
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Yes - I agree that the exercise test should be entirely voluntary, as should all tests on people able to give consent. Children are not generally considered to have the capacity to understand things fully, so their parents or guardians must be consulted on everything.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Sorry I wasnt serious. Sarcasm doesnt travel well online. I couldnt picture LP doing this as It would prove its a sham.
    Valentijn, alex3619, leela and 2 others like this.
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Just thought I'd post this link about UK patients' and parents' rights. There may be stuff there or in the NHS constitution about the right to services other than GPs and hospitals. But as there are few or no effective NHS services for ME in the UK, is there really any problem with being dropped from any 'specialist' ME service for being 'non-compliant'? Especially as there is a right to refuse treatment!
  7. user9876

    user9876 Senior Member

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    The problem of being dropped by the service is about perception of the support you may get with trouble from schools and other doctors. Parents may well have already had problems. However, I don't really think parents should expect any protection from such services as they will quickly disappear if anything happens.

    Although the document you link to talks of the rights of consent doctors will try to enforce compliance with threats of 'safeguarding' and through the child protection system prior to going to a court. Try saying to a social worker no what the doctor is suggesting will harm my child and getting them to take you seriously. My experience is that doctors are quite happy to mislead (lie to) the social workers to get what they want.
    Valentijn likes this.
  8. Dolphin

    Dolphin Senior Member

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    It is disappointing that it looks like they might not publish outcome data from the feasibility study.
  9. Roy S

    Roy S former DC ME/CFS lobbyist

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    Wikipedia has an extensive page on neuro linguistic programming.
    -- "NLP is cited as an example of pseudoscience when teaching scientific literacy at the professional and university level.[ NLP also appears on peer reviewed expert-consensus based lists of discredited interventions."
    http://en.wikipedia.org/wiki/Neuro-linguistic_programming#NLP_as_quasi-religion
     
     
    I would put it in The Emperor's New Clothes category; now a card in the House of Cards.*
     
     
    *House of Cards -- Psychology and Psychotherapy Built on Myth
    http://www.amazon.com/House-Cards-Robyn-Dawes/dp/0684830914
    Valentijn likes this.
  10. alex3619

    alex3619 Senior Member

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    All of psychogenic medicine, and the other last vestiges of Freudian psychiatry, have been described as a cult as well. Its all about dogma and authority. The great men have spoken, and shall not be questioned.
    Valentijn likes this.
  11. leela

    leela Slow But Hopeful

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    Wish there was a "bronx cheer" emoticon.

    ETA: Oh wait:
    [​IMG]
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  12. user9876

    user9876 Senior Member

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    I worked with a couple of people with a background in psycho linguistics and cognitive science who considered NLP a joke.
  13. Esther12

    Esther12 Senior Member

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    I thought I'd repost a comment I made in another LP thread, comparing it to Chalder's approach:

    ...

    In some ways, LP could be helpful to us, as a way of illustrating the quackery of Chalder's approaches and manipulation of patients. LP is less good at hiding it's quackery, but if people do think that the way LP practitioners treat patients is wrong, this makes it hard for them to then go on to defend Chalder's approaches imo.
    Valentijn, MeSci and biophile like this.
  14. biophile

    biophile Places I'd rather be.

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    As they appear to be squeezing out several papers from the SMILE Trial, I would be a little suspicious if there was no mention of outcome data at all despite being collected. They conclude that: yes it is feasible to do a successful study on LP in children. Would be ironic if after all that, another implication was: no, LP does not really work anyway.
    Valentijn likes this.
  15. Bob

    Bob

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    There's no doubt in my mind that LP is profoundly inappropriate, both for children and adults with ME, but it's difficult for the patient population to get traction in the battle of ideas/facts. The authorities, health professionals, the academic community and the media tend to believe, regurgitate and amplify what they are told by people in authority.

    Considering how difficult it's been to shed light on the PACE trial, and to win the battle of ideas/facts, I do not relish a new battle of ideas/facts over LP. It's not a battle that we have any certainty of winning, especially over the short-term.

    However, LP would probably be easier to expose than CBT/GET, in terms of its inappropriateness, and its lack of actual (objective) therapeutic effect, as it is (put simply) purely a positive thinking course.

    The LP trial might demonstrate that small to moderate improvements are to be expected in self-reported outcomes, solely after self-imposed brain washing (or however the psychological aspect of LP is best described. e.g. positive thinking or faith healing.) So if the LP trial were to have the same outcomes as the PACE trial, then it would make it easier to argue that the improvements seen after treatment with CBT/GET in the PACE trial are purely response bias.

    But a 'successful' LP trial would make it easier to argue that CFS/ME is a cognitive-behavioural disorder. We'd have an enormous struggle countering the propaganda associated with a 'successful' LP trial, alongside countering the PACE trial propaganda.
    Last edited: Dec 7, 2013
    Roy S, alex3619, Valentijn and 4 others like this.
  16. Esther12

    Esther12 Senior Member

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    PACE has been interesting in that so often people's views are determined by their prejudices, rather than a real examination of the evidence. This is where LP is likely to be helpful imo - even if it gets better results than CBT/GET did in PACE, it has the markings of quackery which would lead many people to have less faith in the research, and be more interested in critically engaging with the evidence imo.

    I could be wrong though.

    It would be funny (to me) if LP did twice as well as CBT/GET in their subjective outcome measures (I can be inappropriately amused by stuff though).
    Snowdrop and Valentijn like this.
  17. Bob

    Bob

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    If we lived in an ideal world I would agree with you. However, there is a vast amount of information out there about how trials should be conducted (e.g. in relation to: response bias, placebo effect, open-label trials vs blinded trials, and how to design appropriate controls etc.) But very little of it is understood, or known about, or taken into account, by a large number of lay people, decision makers, health workers and academics. I don't think I've ever seen a single academic (or health worker etc.) (who isn't a patient) say that the improvements seen in the PACE trial could be explained by response bias or placebo effect. And the lack of clinically significant objective improvements are rarely mentioned, if ever, except by patients.


    I wonder how such such an outcome would then play out in the health establishment? Would LP become the new therapy of choice, or would a territorial battle develop between LP proponents and CBT/GET proponents? Or would they try to merge LP into CBT for ME? (Oh joy!) Or would it enable us to to successfully challenge CBT/GET/LP and expose them for what they are? (i.e. purely processes that change the way that patients answer questions in relation to their symptoms and disability, and the way they subjectively interpret their illness and disability.)
    Last edited: Dec 7, 2013
  18. Dolphin

    Dolphin Senior Member

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    Note: a full trial has started (@Simon alerted me to this):

    so I certainly expect that outcome data from that will be published.
    biophile likes this.
  19. Dolphin

    Dolphin Senior Member

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    As others have suggested, things can be read into the pathophysiology of a condition based on what it responds to (or appears to respond to). The implications of LP working are that whatever the condition is, it doesn't need drugs to conquer it (basically it is then a psychological/behavioural condition of some sort). This is not a good message if, as I believe, it's not true (at least for most people).

    But it may offer opportunities, as Esther12 highlights.
    Valentijn, MeSci, Purple and 2 others like this.
  20. Dolphin

    Dolphin Senior Member

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    Not sure whether I've pointed this out or not, but this journal allows comments: http://www.trialsjournal.com/content/14/1/415/comments .

    They wouldn't have to be referenced although having one or two references (the paper itself can be one) should decrease a lot the chances of a comment not getting through.
    alex3619 and Bob like this.

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