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Treatment of ME-CFS: A Systematic Review for a NIH Pathways to Prevention Workshop

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jun 15, 2015.

  1. Dolphin

    Dolphin Senior Member

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    Free full text: http://annals.org/article.aspx?articleid=2322801

     
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  2. Sidereal

    Sidereal Senior Member

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    Glad to see that the grave methodological errors that were in the draft report meta analysis are gone.
     
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  3. Valentijn

    Valentijn Senior Member

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    I'm presuming that's sarcasm, since they're still promoting CBT and GET in this one :p
     
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  4. Valentijn

    Valentijn Senior Member

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    Maybe that was where the literature review went wrong. The more general P2P publication is looking quite good, whereas this one is a stupid and bizarre piece of crap. I'd be curious to know who those investigators were, since they're looking (and smelling) like the turds in this particular punchbowl.
     
    Last edited: Jun 16, 2015
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  5. Sidereal

    Sidereal Senior Member

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    I wasn't being sarcastic. I was referring to the horrendous statistical errors they had made in the meta analyses reported in the draft report. They must have gotten statistical advice in the meantime since the analyses are now completely different.

    I don't see it as promoting CBT or GET. If you take the studies at face value and run the numbers, you get a statistically significant effect for SF-36 score for those "treatments".
     
  6. Valentijn

    Valentijn Senior Member

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    Yes, but taking those studies at face value basically requires that they neither read beyond the abstracts nor think about them too much.
     
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  7. alex3619

    alex3619 Senior Member

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    Statistical significance is just a rough indicator that the results are not due to chance. Results due to misinterpretations, biased methodology, poor outcome measures, or many other failures may also not be due to chance. Statistical significance only begins to impress me when it reaches 0.001 or lower. The literature is claimed to be heavily saturated with 0.05 results that were proven wrong or are in doubt. Its a rough indicator, no more, and cannot be heavily relied on. Effect size is just as important as an example. So are appropriate outcome measures., proper study design, proper implementation, and so on.

    When EBM just goes by the numbers it entrenches dogma and false results far too often in my view.
     
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  8. Bob

    Bob

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  9. Valentijn

    Valentijn Senior Member

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  10. Sidereal

    Sidereal Senior Member

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    Yes I agree but the effect sizes were incorrectly calculated in the draft version which is why I was ranting. They've at least fixed their analyses so now we're left with the conceptual problem of studies on which their analyses are based being trash.
     
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  11. Dolphin

    Dolphin Senior Member

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  12. Dolphin

    Dolphin Senior Member

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  13. Snow Leopard

    Snow Leopard Hibernating

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    The review of hydrocortisone seemed incomplete, with a key randomised study left out (eg the Lancet study) and some 'statistically significant' improvements being marked down as 'none' improvements. A third study (combination hydrocortisone with fludrocortisone) was negative. But given the sample sizes (study power), and effect size, this effect actually has a strong possibility of being true. (eg two out of three ain't bad)

    There is also evidence of harm of hydrocortisone which was not properly examined either. But this is the real reason why hydrocortisone is not considered a viable treatment. However, its efficacy gives some clues as to the etiology of this illness.
     
    Last edited: Jun 19, 2015
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  14. jimells

    jimells Senior Member

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    Apparently they didn't read the P2P report where it says to get rid of the Oxford definition. Oops. How can anyone take this stuff seriously with such an obvious contradiction.

    Maybe they figure that only "radicalized" patient troublemakers bother to read their inane crap. Everybody else is too busy running inside their hamster wheel to read this stuff.
     
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  15. Amaya2014

    Amaya2014 Senior Member

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    I'm confused and would like a honest and pragmatic answer to this question. Since being on this forum I've noticed strong opposition to GET as part of supportive therapy for patients. I assumed, since I was very physically active prior to this, that GET was actual exercise such as jogging, swimming, and/or something along these lines. Reading this article the only thing mentioned for GET are qigong and home orthostatic training (I think I saw something about yoga too).

    I get that GET shouldn't be prescribed as if its a cure, but am I missing something? When I read the article it seems like the exercise recommendations is to find a gentle way to keep the body moving. I'm not looking for an argument. Please, I would like to understand.
     
  16. Valentijn

    Valentijn Senior Member

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    GET isn't just "keeping the body moving". The G stands for Graded, and that means that exercise or activity levels should be increased. Initially this meant following a rigid schedule and steadily increasing activity levels every day. Symptoms were to be ignored. But some BPS proponents have now shifted to use something closer to pacing while stilling calling it GET, at least in clinical trials where they don't want to have a ton of seriously deteriorating patients.

    At any rate, no form of GET has ever been effective regarding objective physical functioning in ME patients (or even CFS or CF patients). It was even proven not to work in the trials CBT+GET trials discussed by Wiborg, et al, in 2010: http://www.ncbi.nlm.nih.gov/pubmed/20047707 . So far there is no objective evidence at all for efficacy of any exercise, activity, or movement therapy in ME patients, and a great deal of ME charity patient questionnaire evidence that the graded ones do significant harm to most patients.

    The AHRQ really dropped the ball by refusing to include the Wiborg study. They claimed that it was just a review of the three other studies, and included no new information. However, the three studies which it reviewed had either completely failed to mention actometers at all, or only mentioned them to falsely imply that they were showing physical improvement.

    Something similar happened with the PACE data regarding inability of "recovered" patients to work more, go to school more, be more active, or rely on social benefits less. It was not in the initial publication, but in a separate publication a couple years later. It seems that the current "gold standard" for spinning psychobabble when forced to publish disagreeable data is to keep it out of the initial paper, bury it somewhere else, and claim that only the initial paper involves original research. And some government agencies and Cochrane reviewers (guess which ones) are more than happy to play along.
     
    Last edited: Jun 19, 2015
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  17. Sidereal

    Sidereal Senior Member

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    @Valentijn, you've put your finger on a very important issue here, that of selective reporting of trial outcomes. For the most part everyone except Militant ME Patients will read the main trial paper only - psychobabblers know that - so relegating inconvenient outcomes to secondary papers published years later in low impact journals is the perfect way of hiding things in plain sight.

    The only way around this problem would be to insist on public pre-registration of all studies and insistence by journals to report ALL prespecified outcomes but that raises the question of how journals are going to change to accommodate this. Right now, editorial policies in medicine are lunacy. Papers have to be incredibly short and you simply cannot report everything in one paper, even as an honest person trying to do so, since you'd be over their word limit by 1000s of words. Journals would have to change dramatically to facilitate putting a stop to this selective reporting shenanigans.
     
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  18. Bob

    Bob

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    And don't forget the quite important second objective measure of physical function used in the PACE trial (or the third measure if we include the abandoned actometers). The fitness outcomes, measured by a step test, which demonstrated no improvement after treatment, were conveniently buried in the seventh (roughly - I've lost count) published paper, in a mediation analysis. I say 'convenient' because the failure to improve fitness completely destroyed the hypothesis that GET was based upon i.e. that CFS patients are deconditioned and can be cured with GET.
     
    Last edited: Jul 4, 2015
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  19. Bob

    Bob

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    @Valentijn has given a good overview, but I'll just add that 'GET' has traditionally referred to as a gradual and incremental increase in specific activities. But there are as many different ways to implement/interpret GET as there are therapists. There's also 'graded activity therapy', which I think is supposed to be slightly different, but I'm not familiar with it. Some decent physicians suggest regular light stretching exercises etc for ME patients, as a way to maintain an overall level of health and fitness. But GET is a controversial issue for a number of complicated reasons. Many patients say they were harmed by bad advice to exercise their way to recovery, or to ignore their symptoms, including when receiving GET. Patient surveys indicate that a high proportion of patients have been harmed by GET. GET used to ignore symptoms, so patients were told to push through their symptoms. Patients were told that they were simply deconditioned, or had an abnormal mental response to normal bodily sensations, so they were told that they had to learn to reinterpret their sensations, to push through the pain barrier, and then they'd be cured. Such unsubstantiated advice is pure ignorance, and it's also harmful and utter nonsense. It's a perverse twist of fate that, for the only illness that is defined by an adverse physiological reaction to activity, they implement exercise as a 'therapy'. An unfortunate, perverse, twisted, ignorant, warped intervention designed by people who can't see, hear or listen to their patients. They see what they want to see and hear what they want to hear. The patients are not really ill. Of course, this is all pure unjustified ignorance. Therapists are slowly learning how harmful this the push-through advice is, but the message isn't widespread yet. It's slowly becoming understood that CFS isn't deconditioning, and that pacing must be incorporated into any type of GET. The authorities are slowly learning about the patients and the illness. GET has been sold as a 'treatment' and even a 'cure' despite there being absolutely no objective evidence to support its effectiveness. Actually, all objective evidence demonstrates its ineffectiveness. We're constantly told that GET improves physical function, but it doesn't, as demonstrated in clinical trials, large-scale real-world clinical evaluations and patient surveys. We know it's not a treatment and yet it continues to be the only intervention available to UK patients, along with CBT. And while CBT/GET (non-treatments) are made widely available, no research into meaningful treatments are being invested in, in the UK. And the universal roll-out of GET in the UK has falsely been used to promote the disproven nonsensical idea that ME and CFS are psychosomatic illnesses (or modern day equivalents.)

    Oops, sorry, I didn't mean to embark on a prolonged rant. I only meant to add a sentence to what Val said! Anyway, I hope that fills in a bit of background. It's complicated, and historic, and political. I've only provided the briefest background. In short, it's an ineffective and utterly inappropriate non-treatment, sold as a cure, that has been used to promote the idea that ME is a form of deconditioning or a false illness belief. If it worked, we'd embrace it. And, actually, despite it not working, if it was promoted appropriately, i.e. simply as a pacing tool that some patients might find helpful to improve the quality of their life, then we wouldn't object so much. But it would have to be a form of pacing to be acceptable, and not an indiscriminate mechanism inappropriately targeting activity levels in very vulnerable patients.

    Edit: This is very much a UK perspective.
     
    Last edited: Jun 30, 2015
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  20. Amaya2014

    Amaya2014 Senior Member

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    Thank you for responding @Valentijn. So I think what you're saying is that patients were expected to stick to an exercise program of increasing intensity? Was this ignorance of PEM or more likely that most people didn't believe it was real? (I guess it could be both but if anyone has first hand experience please share)

    Most of the research articles I've seen mentions UK. Was this a larger issue there or have patients in US and Canada and other places having the same issue. For me, I mostly found problems with being accurately diagnosed and then an unwillingness to discuss or acknowledge the illness. I've been encouraged to stay active but none has tried to declare that exercise is the solution.

    Doctors or researchers really thought this exercise was going to cure patients?

    So the hypothesis behind GET is that patients thought they were sick, were falsely convinced that exercise/work/activity was making it worse and "good medicine" was to show patients they could return to normal and eventually no longer need to claim sickness?
     

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