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.
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S. Wessely - Death threats, abuse, smear campaigns - Standing up for Science: 29 March

Discussion in 'General ME/CFS News' started by Yogi, Mar 19, 2017.

  1. Gijs

    Gijs Senior Member

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    The only conclusion i can draw at his point about Wessely is that he is really insane together with Chalder, White e.a.
    They need psychotherapy. Maybe they can start a church with CBT as a new religion.
     
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  2. Sean

    Sean Senior Member

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    *very quiet splash from over starboard side of the good ship PACE, that sounds suspiciously like a one-man lifeboat being launched*
     
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  3. Large Donner

    Large Donner Senior Member

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    I think most people here would agree with that.

    Not objective proof but definite subjective proof.

    See, now there's proof beyond doubt that we are not anti psychiatry.
     
  4. Stewart

    Stewart Senior Member

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    [​IMG]

    Can someone with a scientific background explain to me what the distinction is (if there is one) between what Wessely admitted (in the bolded section above) and scientific fraud? Because Wessely's admission that the PACE team changed their recovery criteria so that they could claim their preferred treatments were 'moderately effective' rather than completely ineffective doesn't seem that far away from an acknowledgement that they falsified their results. But I'm not a scientist, so it's quite possible I've misunderstood how falsification is defined...
     
  5. RogerBlack

    RogerBlack Senior Member

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    Because 'scientific fraud' is not a thing, in any other than the most obvious cases of data falsification.
    I note again that Andrew Wakefield despite his paper reasonably arguably causing close on ten thousand deaths, and having much worse errors in the data collection and interpretation has faced no charges.

    The problem here is that what they did was approved (apparently) by the various people with oversight.
    They did not take the reported figures and lie about them, or alter them.
    They apparently went to the supervising bodies and got approval for their new analysis plan.

    What they did was (assuming for the moment they believed in their study) not fraudulent.

    The fact that they did in fact get approval (assuming no collusion or undue influence) serves to insulate them from nearly all possible consequences other than the retraction of the paper(s) and possibly loss of medical licence.

    We might wish that there was a criminal offence of publishing inaccurate science while being reckless or worse as to its effect on patients.
    There isn't.
    And any such offence is likely to only cover doing things and not revealing them to your supervisory body.

    To make a financial analogy.
    This is not a case of a banker stealing money from old peoples inactive bank accounts.

    It's a case of them changing the terms and conditions of the accounts in order to make accounts that have been idle fee-charging, and going to the relevant authorities to confirm that they can do this with no notice, and those authorities agreeing.

    The overall result may have been to create a paper which mislead most who read it, but they announced all of these flawed things first and underwent the peer review process.
     
  6. Cinders66

    Cinders66 Senior Member

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    It is astonishing that they seem to admit changing the outcome measures to fit what they'd expect. I wish we were privy to his whole talk so we could get his overall tone. Snippets are hard to piece together although it seems same old. I think a lot of the problems from Simon Wesselys way of thinking is that he has no issue with lumping ME and CF syndromes. Unfortunately he then doesn't seem able to realise that just because some of his patients think his approach useful (and he has to display their emails as proof some people like him) that he can't then extrapolate it to the wider more sick or more entrenched population. He seems indignant that there was hostility to the PACE trial before it started and seems to think that's evidence of patients irrationality and anti psychiatric prejudice, whereas if people knew the deeply flawed premise behind the PACE trial therapies, have experience of ME as a horrible illness brought on by infection and made worse by exercise and know that this will be the thing the uk throws money at for the next decade then their judgement "this is a bad way to proceed" seems a reasonable one , not evidence we were all out to bash psychiatrists.
     
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  7. RogerBlack

    RogerBlack Senior Member

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    'Chronic fatigue syndrome' - by the more sane definitions is a reasonable clinical entity that captures most who would have been diagnosable as ME.
    Is it unfortunate that PEM is not a required symptom - yes.

    In most places, anyone in the last couple of decades will have had a diagnosis of CFS, not ME.

    The problem is not lumping ME and CFS, it's using a weakened definition of CFS such that it includes chronic fatigue from other sources in, weakening the effect of any treatment on real patients and bringing in possibly 'merely' depressed people who might benefit from different treatments.
     
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  8. Snow Leopard

    Snow Leopard Hibernating

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    Simon Wessely DOES NOT HAVE THE RIGHT TO TELL US (THE PATIENTS) WHAT MATTERS! (in trial outcomes)

    We are telling him that (subjective) PROMS are not the only thing we care about in unblinded trials. Many patients have been saying this for many years.

    Dear Simon, if you are reading this, when did you first decide to ignore the needs and wishes of patients?
     
    Last edited: Mar 31, 2017
  9. user9876

    user9876 Senior Member

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    They claim this but I am not convinced in that they blocked the release of the trial steering committee meeting which would illuminate this point.

    They have never actually claimed that they got approval for changes to the recovery outcomes.

    With the other changes they did not talk about changes to the SAEs that emerged in the lancet paper. But these were changes from a full protocol released by FoI as details were not in the published protocol.

    I suspect other changes were approved by the approval of the statistical analysis plan. There paper on this does not explicitly mention changes just has new ways of doing things. That makes me wonder what information was given to the committees that should make the approvals. There reasons given for changes are not convincing and are not based on new evidence or unexpected statistical properties which makes them questionable. The approval committees may have rubber stamped them but I don't believe that they actually gave the changes serious consideration.

    The reason they give for the CFQ changes is clearly dodgy. They say it will increase accuracy when it is an alternative marking scheme. So it isn't increasing accuracy like measuring in mm rather than cm. But since the ordering is different between the two marking schemes it is like using a ruler with the numbers in a different order. Which is more accurate - well who knows I've seen nothing that would validate that one is a more accurate rendering of a fatigue measurement then the other. But then looking at the questions in the CFQ I think suggesting either has any degree of accuracy is dodgy.
     
  10. Stewart

    Stewart Senior Member

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    Thanks very much for responding. I don't disagree with anything you've written - particularly about the insulation the PACE team can claim as a consequence of having approval for the changes they made - but I think I'm trying to make a slightly different point (I say 'think' because I don't have a scientific background, so I might have the wrong end of the stick).

    As I understand it, falsification is defined as manipulating your research so that the results are not accurately reflected or reported in the research records. Previously the PACE team couldn't credibly be accused of this, as they've always insisted that they made the decision to change the trial protocol before they'd done any analysis of the trial data - with the implication being that they had no idea what the results would have been if analysed in accordance with the original protocol. In fact when patients first made FOI requests for the results when analysed under the original protocol, the PACE team claimed not to have this data as they'd never done the analysis.

    What Wessely said a couple of days ago calls all this into question. He's clearly stated that the PACE team knew that they were looking at a negative result for all four treatment arms if the original protocol was used, and that this was the reason why they made the application to revise the recovery criteria. If they knew they were going to find that none of the treatments worked and they amended their methodology so that they could suppress the original results and instead report a positive effect for their preferred treatments - well, that starts to sound like falsification to me. But maybe I've misunderstood how falsification is defined (as I said, I'm not a scientist).

    There's also a question of what justification they gave to the oversight committee when they requested the changes. Did they tell them "We're looking at a null result unless we make some changes, and that's going to make us look stupid and upset the people who gave us £5 milllion"? Or did they feed the committee the same cock and bull story about the Bowling SF36 paper that they used in the 2013 Psychological Medicine paper? We don't know to what degree the committee approved what they did - or why they gave their approval - because of the vague and evasive answers the PACE authors have given when questioned on this point.

    I realise that there's no possibility of any charges being brought against any of them - but in the court of public opinion, it looks very bad if you appear to have falsified your trial results. To use your terms and conditions analogy - so far the bankers have been using the defence that there was no way they could possibly have known in advance that the changes they made to idle accounts would disproportionately effect elderly and infirm customers. But now one of their number has inadvertently let slip that they *did* know that elderly people would be most affected, and that they'd made a conscious decision to hit them with additional charges. What they've done is still legal - but people will look at them differently, and think twice about opening an account with them in future...
     
  11. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I think you make a valid and interestingly original point here. I think we tend to think of 'fraud' in science as actually inserting results that were never obtained. This is common enough to deserve a category of this sort. Manipulating apparent outcomes by changing what you report, while still reporting real observations, is very bad science but, to put simply, not just plain lying and so not generally considered fraud. This may be a different distinction from other areas, where deliberately cherry picking what is claimed may be fraud because it convinces people to part with money when if they knew all they would not. The difference may be that in science much of the time there is a degree of cherry picking of what is reported because this has to be allowed in order for important preliminary observations to be published.

    But I do agree that Simon Wessely seems to have admitted that the PACE team deliberately altered their criteria in order to make their results look more positive. And I agree that if that is so it is inexcusable.
     
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  12. Barry53

    Barry53 Senior Member

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    Even if the trial itself was not corrupted (though I believe to some degree at least it was), it is the blatant/flagrant disregard for seeking/acknowledging the truth afterwards that is so reprehensible. If the truth about PACE had been owned up to (as real professional honourable scientists would, no matter how much it might hurt), then all the distress and trauma and wasted lives attributable to PACE could have been avoided. The dead-end offering no exit from the maze would not have been misrepresented as the way out, and resource/energy would have been directed to finding the real exit instead; identifying a dead end is valuable in its own right if not falsified.

    Whatever the legal and professional definitions may end up proving to be regarding the PACE panto, it is as David Tuller commented: "deceptive and morally bankrupt". I cannot believe this will not eventually transition into something legally punitive in due course.
     
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  13. Wolfiness

    Wolfiness Activity Level 0

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    It's a change of story from the "Oh but we did this before we knew the results" defence, surely. Unless they seriously decided in advance that expecting "recovered" people to be able to walk a mile would be "too extreme".

    As bad as everything we already know about PACE is, I think incalculable numbers of kittens would be had if we had fly-on-the-wall evidence of the conduct of therapists and researchers during the trial and the conspiracies of defence afterwards.
     
    Last edited: Apr 1, 2017
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  14. trishrhymes

    trishrhymes trishrhymes.wordpress.com

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    Trouble is, Wessely made damn sure his name did not appear on any of the published PACE papers, so he is talking about what 'they' did, not what he did. White, Chalder et al , if challenged on this, will simply say Wessely's got it wrong.
     
  15. Cheshire

    Cheshire Senior Member

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    Agree. But wether that is true or not, can be proven or not, it reveals that Wessely, a man very close to the PACE team, who wrote an entire book about clinical trial, seems to condone changing outcomes to avoid nul results. That's telling in itself.
     
  16. Wolfiness

    Wolfiness Activity Level 0

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    They already have. They've gone to the bad place where belief is immune to facts. That's their problem IMO.


    I used to think that
    Wessely was inappropriately projecting onto pwME an otherwise justifiable preoccupation with the public's ignorance/contempt/fear of psychiatry. That he spent half a career not [trying to prove that ME is a psychiatric disease so that he can prove ME isn't real], but [trying to prove that ME is a psychiatric disease so that he can prove that psychiatric diseases are real]. That ME was the misplaced standard of his otherwise justifiable crusade.

    I suspect I was naïve.
     
    Last edited: Apr 1, 2017
  17. Sean

    Sean Senior Member

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    Wessely is formally credited in the PACE papers in a variety of roles, including the rather critical one of advising about the trial design.

    Plus that whole 30 years of him on the formal and informal public record arguing that the primary causal pathway in the pathology of ME/CFS is psychological, not physiological.

    If PACE goes down, Wessely will go down with it.
     
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  18. Stewart

    Stewart Senior Member

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    He was also a co-lead at one of the seven trial centres. And in his role as Director of the Clinical Trials Unit at Kings College he oversaw the work of the statisticians who were responsible for statistical analysis and management of the trial database.

    It doesn't look good when the individual responsible for overseeing the number-crunching says you started playing around with the figures because you didn't like the results you were getting...
     
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  19. user9876

    user9876 Senior Member

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    To me it is the intent to mislead that is important. Obviously if you change the data you intend to mislead. But there are other more subtle ways of misleading with research and having the same consequences. I guess the other factor is stopping others doing a competing analysis.

    I'm not sure where I would say failing to correct misleading statements/outcomes when the issues are pointed out.
     
  20. user9876

    user9876 Senior Member

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    We don't know when they made the changes. They have never laid out the timeline. But the trial is open label so they will have had a good idea of the data. Some people also got 'blinded' data quite early; as in they had data just not which trial arm it was associated with and hence they could see if there was a significant result.

    So without details of a time line and how the decisions were made then we don't know. Given they have refused to release such information I suspect it doesn't look good.
     
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