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Watt from MRC defends PACE in letter to Times

Discussion in 'General ME/CFS News' started by JohnTheJack, Aug 27, 2018.

  1. Wonko

    Wonko Senior Member (Voting Rights)

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    It's the old meeting the new - all the monks that transcribe academic books now have to be paid minimum wage.
     
  2. Nasim Marie Jafry

    Nasim Marie Jafry Senior Member (Voting Rights)

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    Exactly, available formats and pricing of books has nothing to do with the writer, I wish people would appreciate this.

    Welcome to forum, @Brian Hughes - am behind the news, did not know you had joined! And I am sure your contributions will be hugely valuable.
     
  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    Still just hiding behind their processes. The only substance to the MRC statement is their reference to Cochrane's work, and we know how problematic that has been. It's already clearly laid out for them in Courtney's comments within the Larun exercise CFS review - I wonder if anyone at the MRC took the time to read it.


    I thought that we still didn't know when the recovery criteria was changed? There seemed to be no reference to this in the TSC minutes. Did you find a date?

    I know that you did go on to say that you were only talking about two of the trial's recovery criteria, but some people can be confused into thinking this is the same as saying a participant could have had baseline data which allowed them to be classed as recovered, so I'd be a bit more cautious with your phrasing on that point.

    Possibly. At the PACE Information Tribunal MRC's Frances Rawles was trying to find excuses for not following the MRC's own policies on data sharing. If the MRC was arguing that the limited data released to Matthees (with no info on age, sex, location, etc) was already personal data that should not be shared, then how can they now make more data easily available?

    That's true. Amazing to me that they've been able to get away with this anyway.
     
    Last edited: Aug 28, 2018
  4. Andy

    Andy Committee Member & Outreach

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    Until we see all reasonable requests for the data are honoured once it's in that system, my assumption will be that they will seek to avoid releasing it to undesirables, for one reason or another.
     
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Maybe someone had a quiet word about not putting your foot in your mouth when you open it.
     
  6. Kalliope

    Kalliope Senior Member (Voting Rights)

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  7. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  8. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Good old ed Sykes. I’m so glad he sat on the CMRC board and changed his views zero and helped us so much.
    Michael sharpe retweeted and liked it.
     
  9. Anthony Carney

    Anthony Carney Established Member

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    WHAT IS A PRIORITY FOR THE MRC?

    I was intrigued to read Fiona Watt's assertion that research into CFS "remains a priority" for the MRC.

    Having a look at the data....

    1. In the past 13 years to 2016/7 £6.4m was allocated to CFS projects.

    2. 45% of the £6.4m was spent on PACE. ie £2.9m.

    3. less than one pound in £2000 spent on MRC research projects in 2016/7 was spent on CFS. £286k of £586m per accounts.

    So

    A. Not a priority is it?

    B. The amounts spent have declined in the years 2015 to 2017.

    In summary only loose change is spent on CFS research. PACE expenditures only appear significant in a pitifully small bucket.


    The real damage from PACE is that it perpetuates the myth that "if only the patient tried harder..persevered they would recover." It's victim blaming.
    The physiological problems of immune system recovery and directly related research receive pitiful allocations of cash.

    EXPENDITURES MAY BE GLEANED FROM THIS DOCUMENT
    Medical Research Council Expenditure on CFS/ME Research, by Project, from 2004/05 -2016/17, £k1
     
  10. Stewart

    Stewart Senior Member (Voting Rights)

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    If you look at the "How It Works" section of the Clinical Study Data Request website, it gives a list of grounds on which the MRC will be able to refuse a request. And if you've been following previous attempts to access the PACE data, some of these reasons may sound familiar...

    "I'm afraid this research proposal is not compatible with the participants' consent forms. Refused."
    "I'm afraid we don't have the data available in the form you've requested. Refused."
    "The study team is already planning to publish an analysis along those lines. Refused."
    "You have a clear agenda to discredit our research... sorry, I meant to say we feel you have a conflict of interest. Refused."

    I hate to be a cynic - and I hope I'm wrong - but the list of sponsors/funders checks that any research proposal will have to pass looks like it was specifically compiled to allow the PACE team to justify keeping their data locked away. And after Fiona Watt's Times letter I don't feel the MRC can be trusted to perform the role of honest broker.
     
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  11. Adrian

    Adrian Administrator

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    Lets not forget that the MRC went to court for QMUL to help suppress the data that showed how much the results were spun
    A major element of the criticism is around the methodology that was followed in PACE and most of the other CBT and GET trials. Hence this just shows that Fiona Watt has not bothered to read or understand the criticism of PACE but probably listened to QMUL or Sharpe and Wessely complaining, This is basically their message and they hide behind Cochrane even though it is following a flawed methodology and did its own outcome switching.
     
  12. Adrian

    Adrian Administrator

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    Its probably a way of hiding data. I would expect it will keep it out of the hands of patients and pressure seems to be applied to those in the UK who may speak out. But then wasn't the PACE data lost?
     
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I get the distinct impression that the MRC and SMC feel on the defensive!

    There is a guy with orange hair who tweets like this.
     
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  14. AR68

    AR68 Senior Member (Voting Rights)

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    Forgive me - I'm not entirely following the story as my attention is elsewhere somewhat - but is the suggestion that the 'extended version' is, in reality, a revised version?

    Rhetorical questions and points but, firstly, they're not being entirely accurate if they're saying 'extended version' as there is some excision (which they appear to have not alerted readers to), also, what was the reason for the removal of that inflammatory paragraph? Was there some concern that - as was pointed out to them - the 'harassment' issue had more or less been rubbished in a legal setting?

    The original inclusion of the 'harassment' stuff was, I'm suggesting, knowingly done as I simply cannot believe that Ms. Watt was unaware of the judgment two years ago. It was untrue propaganda the inclusion of which was highly unprofessional.

    Again, sorry if I'm being a bit dim/repeating the obvious again etc!
     
  15. Adrian

    Adrian Administrator

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    Its not clear. The statistical analysis plan dropped the step test and the recovery criteria as secondary outcomes but it is not the protocol. I think in the plan it says something about setting out the way that the primary analysis would be done.

    If I remember correctly.
    From the TSG minutes I don't think protocol changes were approved at the end but instead the statistical analysis plan was accepted (in an undocumented meeting). The stats plan doesn't mention the changes explicitly so we have no way of knowing whether this was clear to those approving it but the changes are mentioned in the last meeting when the the committee are reminded that they approved the plan in a meeting between the TSG and the data monitoring committee (but no minutes are given).

    So it could be argued recovery was dropped as a secondary outcome measure when the stats plan was written but then explored in an adhoc analysis later. Or it could be argued that the recovery secondary outcome was never dropped just not mentioned in the stats plan which was intended for the primary analysis paper.
     
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  16. Esther12

    Esther12 Senior Member (Voting Rights)

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    Yes, that's my understanding too. And there's no sign of any TSC approval for the recovery criteria they eventually used, or any evidence that this criteria was devised before they analysed data for the 2011 Lancet paper.
     
  17. Brian Hughes

    Brian Hughes Senior Member (Voting Rights)

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    Thank you! I have just landed. Am delighted to be here! :thumbup: I hope I can contribute constructively now and again...
     
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  18. Barry

    Barry Senior Member (Voting Rights)

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    Oh boy! MS and Co will not be amused! And given the how the book's blurb on the back cover says it's "essential reading for students wanting to understand how to better scrutinize psychological research methods ...", I think that very neatly confirms that PACE is being used as an educational example of appalling research methodology. A slam dunk as @dave30th might say :).

    Also:

    upload_2018-8-28_21-31-44.png

    "Ruinous" is a good word for it.

    Could someone clarify Brian Hughes' point 'b' for me please in the context of PACE. I presume he means how treatments the authors favoured were selectively hyped, but not sure if I'm missing something beyond that.

    Feels like it could be worth a whip round to send Michael Sharpe a complimentary copy!
     

    Attached Files:

    Last edited: Aug 28, 2018
  19. Adrian

    Adrian Administrator

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    Data won't be available to patients. We should remember that it was patients requesting and analyzing the data that exposed the spin they had put on it not academics or researchers. Also its patients that are most affected.

    So the MRC are essentially keeping data within a small club and probably avoiding criticism. Will the MRC fund someone who does a reanalysis?
     
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  20. Barry

    Barry Senior Member (Voting Rights)

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    A random hogwash generator maybe.
     

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