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Complaint to the Lancet concerning the PACE Trial

Discussion in 'General ME/CFS News' started by Daisymay, Mar 28, 2011.

  1. Daisymay

    Daisymay Senior Member

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    Complaint to the Lancet concerning the PACE Trial

    Professor Hooper's forty-six page detailed analysis of the PACE Trial (which was published in the Lancet on the 18th February) has today been sent to the relevant executive editor who was responsible for it's fast-track publication.

    The analysis will be placed in the public domain in due course.

    Permission to repost.
     
  2. Enid

    Enid Senior Member

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    Thanks dasimay - its always so good to hear about Prof Hooper - and of course everything he says.
     
  3. Francelle

    Francelle Senior Member

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    Do you mean to say that they published ALL 46 pages of his letter??
     
  4. In Vitro Infidelium

    In Vitro Infidelium Guest

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    The post does rather make it sound like that but - No Hooper's document certainly has not and will not be published by the Lancet and is unlikely to be even commented on by the Lancet editors. Criticsm of published work needs to concise and sharply focussed, a scalpel rather than a lump hammer. If you can't get it across on a page of A4 there's little chance that anyone who could be usefully influenced (editors, competing interests, colleagues, professional bodies) will take any notice.

    IVI
     
  5. Angela Kennedy

    Angela Kennedy

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    Well - page summaries are one thing. Usually Hooper et al provide them. But think of all the official enquiries and documents across the world, pages and pages of them! Still get relevant attention!

    46 pages is likely to be a lot of evidence showing the discrepancies and problems of this trial.
     
  6. Mark

    Mark Acting CEO

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    The PACE trial was a such a disgracefully fraudulent piece of research, on so many levels, that it seems to me something of a challenge to imagine how one could summarise its flaws in a short book, let alone on a side of A4. But we live in the era of the sound-bite, and an era where - judging from the reporting of PACE and the numbers of supposedly intelligent people who have swallowed it whole - even medicine and science now proceed according to dumbed-down agendas, so IVI may be right: maybe that's why the Lancet editors will ignore it. I think a more likely explanation is that they are just accustomed to ignoring anything that defends people with ME/CFS from attack as a matter of blind prejudice, due to the sort of profound ignorance that's only attainable with the help of a world class education, but I suppose these are all to some extent just guesses. Why the establishment refuses to consider both sides of the argument is anybody's guess really - hence all the regular wild speculation.

    There is a valid point in the need to summarise matters more succinctly than Prof Hooper's documents do, though. Full reports are absolutely necessary when the scale of the fraud is so extensive; it needs to be documented, and resistance needs to be registered somehow, if only as evidence for possible future legal action. But to communicate the important concepts to people who don't know anything about the issues, who don't have time to read anything complicated, and who don't really care enough to dig any deeper themselves - people like the readers of the Lancet - something more is required.

    So there is indeed a crying need in all our advocacy for higher-quality 'soundbite' summaries of the important points, well-referenced and with a clear and unambiguous message. There's a need for advocates and support organisations to go through documents like Prof Hooper's and summarise the main points for a wider audience.

    But really, summarising all the frauds and flaws in the PACE research and managing to fit them into 46 pages is quite an achievement - he must have missed a lot out. And however long the arguments presented may be, the capacity of the scientific and medical establishment to dismiss them all with a wave of the hand and a knowing smirk should never be underestimated. How on earth you get people like the Lancet to listen to reason is the $64m question anyway.
     
  7. Wonko

    Wonko Senior Member

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    PACE Trial recommends Completely Rediculous And Pathetic approach to ME symptom management?
     
  8. Esther12

    Esther12 Senior Member

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    I'm not a big fan of Hooper's work, and can't imagine the Lancet will be... but it's not possible to explain a lot of the problems with Pace in the 250 word limit. Even taking one point at a time, some of the problems are just so complicated that a few pages a needed to make them clear.

    There are so many interesting points made in the Pace thread on here, but we do need to condense it in to a more readable form. It's a massive task though: I can't imagine we'd be able to get all the useful information down to much under 50 pages... and we're all poorly! We should be able to expect more from researchers.

    PS: I wouldn't call Pace a fraud. One of the reasons we're able to recognise the problems with pace is that they've not out-right lied, they've just manipulated figures and the way they're presented. They're honest enough to let us see how dishonest they are.
     
  9. Bob

    Bob

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    I don't think I agree with you there Esther.
    The reason we recognise the problems with the study is that we are patient experts and have a deep insight into the subject.
    Clearly the Lancet peer reviewers could not recognise the problems, and were bamboozled with statistics, and all the other methods employed to confuse the reviewers and wider scientific community.

    We don't have access to all the data yet (i.e. the raw data), which would have been handy in order to see exactly how dishonest they are. Without the raw data, we couldn't do a full analysis of the results in order to refute the authors' conclusions (in time to be published in the Lancet.)
    Seeing as it is a government funded study, they should have made the raw data available immediately.
     
  10. Esther12

    Esther12 Senior Member

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    But if they'd been outright fraudulent and falsified results, then you'd have thought they'd have been able to come up with a study that looked much more impressive than Pace!

    I think we agree on the situation, but may have different ideas as to what language would be most appropriate to use in describing it. I'd be very hesitant to use the term 'fraud' unless we had clear evidence that they had falsified data.
     
  11. Angela Kennedy

    Angela Kennedy

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    Esther and Bob, I agree with both of you here.

    My favourite recurring word at the moment with regard to PACE and the analysis we've undertaken on it is 'discrepancies'. If you had to use one word to sum the article up (as opposed to an A4 page) I'd say it would be that word!

    And now I'm off to check I'm using that word correctly... ; )
     
  12. insearchof

    insearchof Senior Member

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    I have not delved into the PACE trial in any detail, but just following on from Esther and Bob's comments if it was a government funded study, then would the data be obtainable under FOI application? If so, it might be worth obtaining and going from there

    Also, for those of you have studied it and the report in the Lancet, was the lancet's reporting of the trial accurate and fair on the basis of the material presented in the study itself?
     
  13. Angela Kennedy

    Angela Kennedy

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    1. Good idea ISO

    2. I don't think so. The editorial was particularly dangerous because of its reifying of the claim of CBT/GET being safe for patients with ME.
     
  14. Bob

    Bob

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    1. The authors cleverly withheld the data when they published the study, so we couldn't respond to the Lancet with a full analysis. I was expecting them to release the data in time, though, at some point in the future. If they aren't intending to release the data, then I expect we should be able to get it through a FOI. I can't foresee any reason why we wouldn't be able to.

    2. The editorial and the conclusions of the paper have a lot to do with the use of wording, such as 'moderately effective' treatments, and 'safe treatments'. It's not straightforward to challenge the use of the word 'moderate' because it's such a vague descriptor, although I believe that it is used incorrectly and there is a very strong case that it should be replaced with the word 'minimal' or 'minimally effective treatments', based on the results of the study. So unfortunately, we are reduced to arguing about semantics, because of the clever use of words by the authors.
    With regards to the word 'safe', I think we are in need of the raw data to check this, because they didn't provide the data for exactly how each patient reacted to the treatments, and how many patients got worse after treatment.
    It's also not straightforward for us to challenge the words 'safe' and 'moderately effective' because the study was designed to exclude the most severely ill patients from the study, along with using unofficial diagnostic criteria which allows inclusion of patients with idiopathic or psychiatric related fatigue. So the whole basis for the study is flawed, and the results should not be extrapolated to be used in relation to the disease ME, or even to 'CFS' as it is defined in the UK or USA, and they should not be extrapoloated to be used for ME patients with any severity of illness. However, I believe that the authors do not qualify their statements about 'safe treatments' or 'moderately effective treatments'. They imply that the results of the trial applies to all ME patients.

    These are the reasons that I would call it fraudulent, rather than there being discrepancies. Not only has the data been presented in the conclusion with an immense amount of unscientific spin, but the study is set up on a false premise in the first place, and the conclusions have been extrapolated to relate to everyone with ME when they didn't use the official diagnostic criteria, but used a more heterogeneous criteria, and they didn't include severely ill patients in the trial.

    But I agree that we don't need to argue about the use of the word 'fraudulent'... If we are talking about it as a legal term, then it would be extremely difficult to prove fraud in a court... I agree with Esther that we all agree on how appalling the study was.

    Fraud: "intentional deception resulting in injury to another person". I think that just about covers the PACE Trial! But maybe not in a legal sense.
     
  15. Enid

    Enid Senior Member

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    Yes quite agree Bob - it's the clever use of words together with intrinsic flaws of the trial.
     
  16. insearchof

    insearchof Senior Member

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    So, the Lancet accepted and published the study, which I assume made reference to the data, but did not otherwise publish the data or otherwise make it available ? Is that correct? If so, how common is this practice and in what circumstances is it used ?
     
  17. Bob

    Bob

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    Selected data was presented and interpreted, but the raw data was not given. That seems to be normal practise.
    I don't believe that the authors invented the data that they presented, but they were selective about what data they presented, and of course they have to interpret and filter their data in order to present it. So in order to make a full and complete analysis, we would need the raw data.
     
  18. Bob

    Bob

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    Prof Malcolm Hooper's complaint to the editor of The Lancet re The PACE Trial


    It looks like Prof Malcolm Hooper has now published his critical analysis of the PACE Trial...


    "REPORT: COMPLAINT TO THE RELEVANT EXECUTIVE EDITOR OF THE LANCET ABOUT THE PACE TRIAL ARTICLES PUBLISHED BY THE LANCET"
    http://www.meactionuk.org.uk/COMPLAINT-to-Lancet-re-PACE.htm

    Download it as a Word doc format here:
    http://www.meactionuk.org.uk/COMPLAINT-to-Lancet-re-PACE.doc





    And here's a bit of an introduction and background to the complaint, by Margaret Williams, that's interesting to read:

    "The Media and ME"
    http://www.meactionuk.org.uk/The-Media-and-ME.htm

    Extract from "The Media and ME":
     

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