The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

Controversy over exercise therapy for CFS: key lessons for clinicians & academics (Mitchell, 2017)

Discussion in 'Latest ME/CFS Research' started by Dolphin, May 4, 2017.

  1. Dolphin

    Dolphin Senior Member

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    http://apt.rcpsych.org/content/23/3/145?rss=1

     
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  2. RogerBlack

    RogerBlack Senior Member

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    I wrote a reply to this, we'll see if it's going to be published.
    In short - any even statistically significant improvement may be clinically irrelevant and that small clinical improvement has to be set against poorly measured harms, which are likely to be systematically underreported.
     
  3. Esther12

    Esther12 Senior Member

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    Have you sent it already? That was quick! Or did you know this article had been out for a while?
     
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  4. RogerBlack

    RogerBlack Senior Member

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    Last night.
     
  5. user9876

    user9876 Senior Member

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    I think it is worse than that. The measures they are looking at are subjective measures and highly likely to be biased in an open label trial. So any results they talk about are simply too error prone to have any meaning.
     
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  6. Chrisb

    Chrisb Senior Member

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    Do psychiatrists have a tin ear, or is it considered witty to call a feature in their comic "Round the Corner?" Do they think that they score extra points if they get away with it?

    In their favour it might be regarded as an honest representation of the attitude which some have for their patients.
     
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  7. Mohawk1995

    Mohawk1995 Senior Member

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    Can't they just put the notion that CBT and GET can effectively treat ME/CFS to bed! Could exercise and progressive functional restoration be beneficial in someone who has received effective clinical treatment for ME/CFS? I definitely think so, but as an effective primary treatment, NO! If it was, there would be far more people going around singing its praises much like what happens when someone receives antivenom for a deadly snake bite and survives.

    This coming from a Physical Therapist who believes specific types of exercises can be effective treatment for many conditions. I am a big proponent of activity and exercise, but not in this way.

    I am glad they are at least acknowledging there are flaws in the data.
     
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  8. deleder2k

    deleder2k Senior Member

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    What the F:

    Almost all of the studies reported comorbid depression, affecting between 18% (Wearden 2010) and 39% (Jason 2007) of participants, and this is likely to have in uenced treatment response – indeed, up to 54% of patients were taking antidepressants.
     
  9. RogerBlack

    RogerBlack Senior Member

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    Yes, also mentioned.
    But, even the most optimistic claims of PACE, the recoveries weren't clinically what any reasonable person would take to be 'recovered', meaning the very real question of bias is almost irrelevant.
     
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  10. Barry53

    Barry53 Senior Member

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    Oh ... I missed that! It is actually just a bit sick, and unless I'm missing something, not really funny.
     
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  11. Barry53

    Barry53 Senior Member

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    But being as we are dealing with some highly influential, highly unreasonable people, who still try and cling to the very small numbers, the unblinded-study-with-subjective-outcomes absurdity completely wipes out those small numbers.

    I would love to know if there is some formal statistical technique for quantifying/qualifying the effect of combining an unblinded study with subjective outcomes. And then apply that to the tiny numbers of PACE, and prove that those numbers are really zero!
     
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  12. alex3619

    alex3619 Senior Member

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    Kieth Laws did a reanalysis of the published long term recovery data, just what was published in their paper, and showed patients were better off with SMC than CBT or GET. However this used the highly flawed criteria from PACE, if we had full data we could probably prove patients were much worse off with CBT or GET.
     
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  13. Esther12

    Esther12 Senior Member

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    Edit - Dolphin pointed this out:

    Considering it was in the British Journal of Psychiatry, that comment was not as bad as I expected. I found the tone irritating when I first read it, and still a bit did on a re-read, but less so.

    Really, the British Journal of Psychiatry should have published a piece saying "oh-oh, our President has been promoting quackery, and then smearing the patients who tried to point this out, and none of us noticed until some American academics took a look at the evidence for us". Submitting a piece like that might require more bravery than British academics are known for. I don't know how much leeway we should give UK psychiatrists for the dire situation of UK academic psychiatry, but I felt a bit more sympathetic on a second reading. It almost read like it was hinting that there was serious trouble here, without wanting to come out and say it.

    Some notes, but I've not gone back to the Cochrane review to fact checking all the details, so this is just from memory and I may have missed stuff.

    The main annoying thing was that it really failed to address problems with nonblinded trials relying on self-report outcomes properly, particularly important when, as part of trial, patients are given 'empowering' models of illness and positive claims about treatment efficacy. There was this paragraph, but throughout most of the article it was written as if changes in self-report outcomes reflected real changes in health and ignored the key reason for concern from patients:

    PS: Not just alleged, they state that they did!

    Other annoying things:

    Good the issue of objective outcomes was mentioned, but fails to mention PACE's objectively measured fitness data, which showed GET was not associated with an improvment in fitness:

    Given the problems with it, I think it was good PACE attracted controversy, rather than being mindlessly accepted in the way that it was by so many of the thickos in British medicine.

    Also, the professionals criticising PACE have recognised that it was patients who led the way - the leadership role of patients does not exactly come across here, and generally I didn't like that way patient's concerns were written about, especially as I reckon half the members of this forum could tear apart some of this guys claims in a debate. Good to have problems with data sharing mentioned, but that could not have easily resolved the problems with the trial's design, and he does recognise this later on, in a section I already quoted:

    Only some of PACE's data has been released (hence the new expression of concern at PLoS):

    -It largely fails to criticise the Larun review, which is odd given the problems recognised by the author about PACE and the presentation of results, yet dismissed by Larun even when these issues were raised with her in submitted comments. The comments from Courtney and Kindlon do a good job of showing the problems with the review, and Larun's responses are embarassing.

    Good things:

    -Some little important details were clarified that often are not. eg the limited nature of Specialist Medical Care in PACE: "In the PACE study, the control arm received specialist medical care alone (effectively, treatment as usual)".

    -Mentioned the lack of things like actometer data, and say this data would be useful.

    This paragraph gets the figures right, and is a fair summary of things. Although it would have been good to get an explanation of the problems with the earlier recovery critieria:

    He gets this right and clear:

    Here's the conclusion:

    Overall: step in the right direction, and I now feel a confused mix of anger and gratitude, but we've got a long way to go.
     
    Last edited: May 5, 2017
  14. Barry53

    Barry53 Senior Member

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    I think it is part and parcel of the snowball effect - the truth is now at the beginning of being on a roll, and is on the cusp of attaining its critical mass point. What would be the chances of this being published without all the campaigning that has gone before it? What are the chances of more and more like, and better than, this with continued campaigning?

    I am especially pleased to see this ...
    I have been saying in posts along the way, that releasing of trial results should actually mean releasing a complete package, comprising results along with the full (anonymised) trial data; not just cherry-picked, but the whole data set.

    No data? No publication of results! Results do not deserve to be published if not released alongside the dataset for enabling open unbiased peer review. And by unbiased, I include the avoidance of data subset bias.

    In fact the notion of "releasing trial results" is something of a misnomer as it currently stands - it is only ever really a "releasing of one interpretation of trial results". Which is why the enabling of open peer review is so important.
     
    Last edited: May 5, 2017
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  15. Snow Leopard

    Snow Leopard Hibernating

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    The bias of unblinded studies without objective measures of disability are always going to be a blind spot for these people, because this blind spot is central to their field - psychiatrists believe thoughts and cognitions, namely how we feel about symptoms are more important than objective disability caused by those symptoms. Apart from this blind spot, I am glad to see reasonable criticism of the malpractise by the PACE trial authors - even if he did not tell the complete story.
     
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  16. A.B.

    A.B. Senior Member

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    It's a blind spot because if they acknowledged it, they would put themselves out of business.
     
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  17. adreno

    adreno PR activist

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    That's not going to happen straight out, but when one from their own ranks starts to tentatively criticize the top brass that is a good thing, and a step in the right direction, as you say.
     
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  18. Valentijn

    Valentijn The Diabolic Logic

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    Based on the definition given of CFS and the largely uncritical acceptance of the primary treatments for it being CBT and GET, the author appears to be deeply involved in the field of psychobabble. That's nothing new, unfortunately :rolleyes:

    But what makes this piece exceptional is that even a committed psychobabbler is questioning the methodology of PACE and the trial authors' policy of data secrecy. The PACE authors are essentially under siege from all sides now, including from within their own stronghold of psychobabble.
     
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  19. Yogi

    Yogi Senior Member

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    This is the journal of RPsych so finally after 10 years after being told about the scandal they have made one small step towards whispering it.

    Don't worry under the tab for the quack you refer, Professor Sir Lord Regius Wessely, there is the topic of Malingering by patients (i.e. fraud)

    So they won't deal with the biggest medical and scientific and insurance fraud possibly in history perpetrated by those right under their noses. But they deal with the issue of malingering fraudulent patients (with ME patients making the bulk of those being accused).

    They have articles on patients presumably with false illness beliefs and MUS malingering and how to call out such patients without actually referring to as such.

    http://www.rcpsych.ac.uk/default.aspx?page=17609

    http://apt.rcpsych.org/content/23/2/115
     
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  20. Yogi

    Yogi Senior Member

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    "perhaps inadvertently" :lol::lol::lol::lol::lol::rofl::rofl::rofl::rofl::rofl:.

    Imagine a CFS patient using that line in a court of law or with the DWP or insurer when one is caught out.
     
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