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ABC radio - Comparison of treatments for CFS - PACE trial

Discussion in 'General ME/CFS News' started by dasiymay, Apr 16, 2011.

  1. Mark

    Mark Acting CEO

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    A year or so ago I spoke to a few people I know and respect who work on counselling and psychotherapy and asked for their views on CBT. Universally they confirmed the scepticism and I sensed a degree of resentment of the growing dominance of the approach. (And I wondered whether other approaches to psychology and psychotherapy might be important allies for us).

    One point that rang true was that CBT is gaining popularity because it is supposedly more 'scientific' and more amenable to scientific analysis. I was told that the way it's structured makes that true, to a degree, but that it seemed likely that it wasn't particularly more effective than other forms of therapy but just easier to produce (apparent) evidence in its favour.

    I still think the dutch actometer data should have been a potential killer blow, and it's the stand-out thing about PACE, for me, the way they failed to do that follow-up. Consider: the Dutch results seemed to show that when patients filled in questionnaires to the effect that "I am more active after the therapy", the actometer data showed this was not true. If PACE had confirmed this - which it easily could have done if the actometers had been retained after the study - that would have undermined the entire evidence base for questionnaire-based assessments of success. That wouldn't just affect CBT for ME/CFS, but potentially make all questionnaire-based assessments unsafe. It could perhaps have undermined CBT as a whole and a lot more besides.

    No wonder they decided halfway through their study to change the protocol and not apply this test!

    But in doing so they exposed their own manipulation of methodology in order to fit the results they want to demonstrate. And combined with the timing of the release of the dutch data just before the decision to abandon actomers (I think...I'd like to see all that worked up as a full chronology), that swings the way it looks from confirmation bias to conscious fraud, for me - not, perhaps, legally speaking, but in practice "this decision was for the participants own good because it wasn't fair to ask them to wear actometers again" strains credibility to breaking point.
  2. Snow Leopard

    Snow Leopard Senior Member

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  3. Sean

    Sean Senior Member

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    They are dangerously close to fraud on some PACE stuff. That is about the most generous interpretation that can be put on it.

    When I read White & Chalder's truly pathetic 'justification' for not using actometers at outcome, I knew PACE was not going to be rigourous or fair, and I lost what little faith, respect, and patience I might have had left for that side of the debate. Anybody who so casually and inappropriately rejects using highly relevant and easily obtainable objective measures of effect, especially when baseline data has been gathered and funding is available for collecting outcome data, is not worthy of the title 'research scientist'.
  4. Dolphin

    Dolphin Senior Member

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    Some of the letters submitted dealt with the point that has been raised in this discussion and was raised in the interview about whether CBT and GET can reverse CFS/return people to full functioning e.g.

    http://forums.phoenixrising.me/show...-letters-that-were-not-accepted-by-the-Lancet


    -------
  5. Dolphin

    Dolphin Senior Member

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    The one or more papers of mechanisms on this trial are going to be about other questionnaire results and the like. They're not going to be much use at all at getting at the physiological root of the problem.
  6. Dolphin

    Dolphin Senior Member

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    The Wiborg study was published in 2010. The pedometers were dropped some time between 2001 and around 2003. However, the pedometer data for Prins et al (2001) was released around 2002 and the data was presumably available/collected years earlier. Peter White had dealings with Gijs Bleijenberg on the CDC committee (for example) in the early 2000s. There was also the Friedberg case study around then which suggested actometers may show no increase.

    Three rejected letters mentioned the Wiborg et al. (2010) data http://forums.phoenixrising.me/show...-letters-that-were-not-accepted-by-the-Lancet :
  7. Snow Leopard

    Snow Leopard Senior Member

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    I think we need to leverage (a) the importance of actometer results and (b) long term followups (eg 2 or even 5 years after the conclusion of the intervention).

    Since baseline data was gathered, there is no scientific reason why this cannot be done.

    I suggest this is something to push for.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Oh My God, what a Scumbag POS this Horton is!!!!

    I hadn't actually listened to this yet. Unbelievable!!!!
  9. Mark

    Mark Acting CEO

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    Crucial point. I have thought about this quite a bit, the idea keeps coming back. The dropping of actometers seems like the most blatant thing about PACE to me: anybody can see how dodgy that is without having to know any of the history or detail: it's pretty much a smoking gun for me. And if this could be followed up asap, it has the potential to demonstrate that the questionnaire results are all illusory - that's why it's too dangerous for this experiment to be completed and obviously that's why it wasn't done. And at any time it could be followed up; even later on it might at least show that any gains were not sustained, and it could even show long-term harm from the approach taken. Crucial.
  10. dasiymay

    dasiymay Senior Member

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    I agree that failrue to use actometers is so very telling, but surely ignoring ALL the biomedical research is THE pivotal thing in PACE, all else follows on from that, when you see the biomedical evidence you see their theory and assumption that we are wrongly thinking we are ill etc is scientifically invalid hence the premise of the whole trial is invalid end of story! By ignoring the biomedical evidence they are in breach of the Declaration of Helsinki and they are in breach of basic scientific principles of research.

    I absolutely agree with all the excellent analysis of the PACE trial that has gone on here and on other lists to show what a scientific fraud it is BUT the primary issue is they ignored all the biomedical evidence because it invalidates their theory of how the disese is perpetuated and the whole trial.

    If their theory were to be correct then wrong illness beliefs and fear must be able to cause all the biomedical abnormalities, the 738 chemicals found in the CSF, all the immunological findings, all the neurological findings, all the virological findings etc etc etc and they would have to be able to prove that CBT/GET corrected these findings. No wonder they ignore all the biomedical evidence!

    Somehow we need to inform the medical profession of all the biomedical evidence and then the psychs rule will be in crisis. That's the crux.
  11. Mark

    Mark Acting CEO

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    Excellent analysis Daisymay! The actometer-dropping is just the latest extension of the tip of the iceberg of ways to ignore biomedical evidence - I just think it may be just about the least subtle example yet. Maybe the way that the Lancet's weighing in to ignore all scientific critique of PACE is more blatant still though...

    As to informing a medical profession that (in the UK) largely reads nothing but the Lancet...hmm...we can continue consolidating that biomedical information on the internet, and keep taking links and printouts in to doctors...which is a continuing job and not an easy one...especially if they've obeyed the instructions to ignore our 'obsessing' about medical and health matters...

    But really, ultimately, I'm not sure that informing doctors will work as a strategy because they don't have time for all that really, and treatments will be their major focus, not (for most) a long and complex study of the underlying science, and not a load of disputed tests which they can't easily access anyway - though these are the practical focus for us as individuals. And apart from that, I've had enough good and frank conversations with medical practitioners frustrated by the increasing dogmatism over 'evidence-based' medicine and open-minded to what I'm saying, to realise that many of them feel almost as powerless as we do in this situation. So for the wider political struggle, perhaps we really need to reach scientists with the biomedical evidence...and on all fronts, all we can do is just keep plugging away...
  12. floydguy

    floydguy Senior Member

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    They should not like evidence-based medicine, if only for their own self-interest. Evidence-based medicine is really about adopting the guidelines and demands of the insurance industry (or I suppose NHS in the UK). If they fully succeed then doctors won't be necessary or they will only be needed to sign the prescription pad or the lab order. Hmm maybe they've already succeeded :(
  13. Dolphin

    Dolphin Senior Member

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    If they had used actometers and people got up to a normal level of activity (on average - none of this taking an individual and misusing stats like that), that would have been interesting. Rehabilitation can work to an extent in some conditions (but it doesn't mean that all the problems are solved). I think they would have found that it really doesn't work that well in ME.

    An experiment couldn't necessarily test all hypotheses; but if it focuses on one or a few, it should try to do them well esp. if it costs 5m. It didn't (do it well) here.
  14. Angela Kennedy

    Angela Kennedy *****

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    Mmn. So they would have needed to actually have ME/CFS type patients selected in, and used actometers. And trialled the correct form of 'pacing'. My, that WOULD have been an interesting trial!

    (Sorry about the sarcasm there. Obviously, that's all what should have been done in the first place...)
  15. Angela Kennedy

    Angela Kennedy *****

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    And avoided all the other discrepancies and ethical pitfalls as detailed in Hooper, for example.
  16. Dolphin

    Dolphin Senior Member

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    The diagnosis point is important. However, even if they had used the "wrong" form of pacing, data from the CBT and GET legs could have been of some value. But just basing it virtually all on questionnaires as they did, it was not too far from flushing 5m down the toilet.
  17. oceanblue

    oceanblue Senior Member

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    Effectiveness of CBT in other illnesses

    A bit late, but this might throw some more light on the debate about the general usefulness of CBT. I'ts a review of meta-analyses and finds that CBT is pretty helpful for some treatments eg the ones it was developed for eg depression and generalised anxiety disorder and less effective in other areas.

    The empirical status of cognitive-behavioral therapy: a review of meta-analyses.

    When looking at this area I found a lot of the criticisms mentioned on this thread that CBT is the pre-eminent psychological therapy because it's the one most researched, rather than the best. There doesn't seem to be any evidence CBT is better than other therapies (and some evidence that it's no different).
  18. Esther12

    Esther12 Senior Member

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    I've also seen criticism for CBT for depression/anxiety that's similar to some concerns we have with Pace:

    That the questionnaires used to measure the success of CBT measure those patient's responses which are most easily effected by CBT, but do not effectively capture the problems of 'depression' or 'anxiety'. I think that CBT is likely to be helpful for many with these conditions, but it's critics raise a lot of worthwhile points too - both in terms of efficacy of competently done CBT, and the difficulties of ensuring CBT is performed competently.
  19. Hope123

    Hope123 Senior Member

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    In the US at least and probably in other countries, CBT is promoted partly because it is less expensive. Since CBT outcomes are "measurable", insurance companies have a marker by which they "know" when treatment is no longer needed and can stop paying for it. It's possible that other types of therapies are more effective or less costly but without people doing studies on them with some type of measurable appropriate outcome, health insurance companies don't want to pay for it and thus there is less push for those treatments.

    A stereotypical example of this would be the person who goes to psychotherapy for years and doesn't get any better necessairily. Now, some people might actually benefit from years of therapy but there might be other cases where the patient/therapist extends treatment for reasons of psychological dependence/ reimbursement (respectively).
  20. oceanblue

    oceanblue Senior Member

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    That's interesting, though obviously it's difficult to assess psychological problems any other way than subjectively (as opposed to CFS where objective measures are feasible and desirable). Do you have any links to these questionnaire bias problems of not measuring the relevant outcome? ta.

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