New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Response to the editorial by Dr Geraghty by the PACE Trial team

Discussion in 'Latest ME/CFS Research' started by Tom Kindlon, Jan 24, 2017.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    Free full text: http://journals.sagepub.com/doi/full/10.1177/1359105316688953
     
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  2. dyfalbarhau

    dyfalbarhau

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    Did the article really need all those contributing authors? Especially when it boils down to "the only correct interpretation of PACE is ours"?
     
  3. Joh

    Joh Inactivist

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    Did I miss something?

    Nice, to suggest that Keith is preventing research into ME:
    At least, while they're busy writing passive-aggressive justifications, they can't cause any other harm.
     
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  4. Esther12

    Esther12 Senior Member

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    Maybe done to show that those authors were not backing away from PACE (yet).
     
  5. actup

    actup Senior Member

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    Dr Michael Trump ( sorry I mean Sharpe- keep getting those two mixed up with their "alternative facts") has zero evidence to back up his claims. Small wonder I get them confused. I do suspect though that Sharpe has been reading Trump's book, The Art of the Deal.;- /
     
    Last edited: Jan 24, 2017
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  6. Esther12

    Esther12 Senior Member

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    Their interpretation of Geraghty in point 9 of their response is a bit odd as in point 5 (where it looks like they caught a genuine slip) they do quote him talking about the requirements of their recovery criteria other than the SF36-PF scale. This is one of those things where the language wasn't perfectly clear - I'm looking foreward to a Geraghty response to clarify matters for White et al. (There were a few parts where is seemed White would benefit from some clarification!)

    It's hilarous watching them now try to play down their own complaints about vexatious FOI requests. Surely most people in UK medicine are going to have noticed their 'woe is me' weeping on this. White was campaigning to get the FOI Act changed!
     
    Last edited: Jan 24, 2017
  7. Esther12

    Esther12 Senior Member

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    I was reminded of White's submission re the FOIA:

    http://forums.phoenixrising.me/inde...st-and-calling-for-changes-to-foi-laws.42027/

    (He also attempts to imply the participant requests to destroy their data were a result of concern about FOI requests, when that does not seem to have been the case).
     
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  8. Esther12

    Esther12 Senior Member

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    I knew there was another thing that pissed me off:

    I wonder what Alem Matthees thinks about that. Or any of the 12,000+ people who've signed a petition calling for the retraction of misleading PACE claims. Or me!
     
  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    #MEtoo
     
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  10. Snow Leopard

    Snow Leopard Hibernating

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    They seem to be confusing the words "corrected" with "contested".

    After reading the reply - it sounds overly defensive and uses a lot of weasel words (deliberate imprecision).

    Deny Deny Deny (don't bother admitting when things could have been done better!).
     
    Last edited: Jan 26, 2017
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  11. Dolphin

    Dolphin Senior Member

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    So 2 people, the ones crossed out, are not co-authors of the reply to Dr Geraghty.
     
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  12. user9876

    user9876 Senior Member

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    Yes I take it as a statement from all the authors that they are happy to continue to mislead and lie to patients and other medical professionals. Given the current debate there is no excuse for them not understanding the issues.
     
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  13. Cheesus

    Cheesus Senior Member

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    It's an appeal to authority, which is also a position they take in the paper in citing the support of the Lancet, NICE and NHS Choices. Appealing to authority is a poor defence of scientific evidence, which should need no support of authority in order to withstand criticism.
     
    Last edited: Jan 25, 2017
  14. Sean

    Sean Senior Member

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    On the good side, their stubborn pig-headed refusal to face reality is of the self-garroting kind.

    Good chance for Dr G to land some serious blows in his reply.
     
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  15. Cheesus

    Cheesus Senior Member

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    My understanding is there will be editorials from a broader array of people in response to this reply.
     
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  16. Sean

    Sean Senior Member

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    Sounds like things could get interesting.
     
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  17. trishrhymes

    trishrhymes Senior Member

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    That many authors for such a load of self justifying waffle looks very silly indeed.

    Good to see @Keith Geraghty has them seriously rattled.

    I do hope there will be other experts providing a counterbalance. I fear lots of readers will take the power of numbers on trust and believe these self-serving idiots.
     
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  18. user9876

    user9876 Senior Member

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    They make this claims

    I would argue that the didn't give sufficient reason for protocol changes the one where they say that using continuous scoring rather than binomial scoring as it increases accuracy is unsupported. It is not like saying measure in mm rather than cm as they are different marking schemes with different orderings. So to claim that one marking scheme is more accurate than another they need to go back to show one gives a more accurate rendition of fatigue in patients than the other. No such study was referenced.

    Further there are secondary outcomes (such as their recovery ones) that have not been published. They published a post-hoc recovery paper but simply dropped the recovery measures between the protocol and their statistical analysis plan. The question may be did they get explicit approval for this from the ethics committees or did they just get the stats plan approved and the ethics committees failed to notice.

    PACE does raise serious issues about whether the structure of research governance is sufficient. They designed a protocol that was not capable of answering the questions that they were trying to test because they relied on subjective outcomes where some treatments were aimed at changing subjective feelings about the disease. Then they weakened all the criteria. The fact this was approved by committees raises questions about the committees and what information was provided and what the committees actually approved. We have been told we are not allowed to see this information.

    Much of the press coverage around PACE with headlines such as get some exercise has caused distress to patients. Also offering treatments that don't work is likely to distress patients especially when the treatments seek to blame patients for not doing enough or telling patients that they just believe they are ill.

    Interesting that the don't say that the protocol was published after the start of the trial which is what should happen. Or that they deviated significantly from the protocol.

    It is clearly false. Their trial showed that by their own definition of recovery that patients were not more likely to get better with CBT or GET. The way they claimed this was to have a recovery definition that allowed someone to get worse with the primary outcome measures.

    They failed to take steps to minimise bias as they did not blind assessors and relied on self reported measures rather than objective ones which is likely to add bias. I fail to see a how whether a clinician has 'dedicated their careers to care for thousands of patients with CFS/ME' is reverent to the refudiation of the point about investigator bias. In making this point they are trying to appeal to other doctors emotions rather than making a valid point on the subject.

    They did report numbers which is how we know their claims that the LTFU data supported their favoured treatments was spin. What they didn't do clearly was report their results clearly in the abstract or press releases. That would have said there was no significance at long term follow up.
     
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  19. user9876

    user9876 Senior Member

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    This is very dodgy although perhaps standard practice. To do a comparisons of means this must be a valid measure which requires that the scale is an interval scale. That is an improvement of x from point y is the same as an improvement of x from point z. With the SF36 scale I think this is dodgy basically does a change from being limited a lot to limited a little when walking one block represent the same change in physical function as a change from being limited a lot to limited a little when walking a mile. If they cannot demonstrate that this is the case their analysis is highly questionable. The CFQ is worse since it has different weightings for changes in physical and mental fatigue due to the number of questions about both.

    That is of course ignoring the fact that these are not measures of ability but reports. So their claim should be that there is a moderate improvement in reports from patients for techniques that tell patients they will recover if they ignore symptoms and see them as temporary. Put in those terms it is not a good claim especially as it is not supported by the objective measures they did make.
     
  20. user9876

    user9876 Senior Member

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    They are inaccurate here. In there paper they added additional clauses to their caseness definition so that there are a number of people who are rated as still meeting the Oxford criteria by doctors by are not in their recovery figures due to the sf36 or CFQ scores.

    Clearly people could not meet the improvement criteria at the start as this is not measureable concept at the start.

    What they don't mention is the number that met on or the other primary outcomes at their absurdly low 'normal' levels at the start.

    The fact that 1% met all these criteria at the start should have worried them and made them carefully review their criteria. If they had gone through this basic check they would have noticed their stats were dodgy. They have of course never commented on the issue of bad stats in working out the normal range.
     
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