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PACE Trial application to MRC for funding in 2002

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by JohnTheJack, Feb 8, 2018.

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  1. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I asked the MRC for the application form. I received a heavily redacted version and asked them to review.

    I have now received a somewhat less redacted version.

    I note Wessely named as collaborator and that AfME sent a letter in support of the trial (redacted).

    Any thoughts on whether it's worth appealing to the ICO for any of the redacted information?

    https://www.dropbox.com/s/irrd19retjtmnzl/R - PACE Trial application 070218.pdf?dl=0
     
    JohnTheJack, Feb 8, 2018
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  2. James

    James Established Member (Voting Rights)

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    James, Feb 8, 2018
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  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    Thanks for that John.

    I don't know whether appealing to the ICO would be a good use of your time. Have you contacted Action for ME about this? Maybe you could ask them for a copy, emphasise that it's only by getting this stuff out in the open that people will ever be able to "move on" (as their trustees put it).

    Other redactions it would be good to get:

    Info on the suggested referees would be good to get, and the proposed TSC and Data and Ethics monitoring committees.

    Would also be good to get the letters of support from appendix 12 & 13. Do you know if they were deliberately omitted, or just happened to not be a part of that file?


    I quickly skimmed through, and made a few notes:

    More talk of need for a 'definitive study' on page 4. There's a brief summary of CBT/GET/APT in that 'public engagement in science' section... although nothing about public engagement in science.

    Also on page 4 it says that personal information is anonymised.

    I'm not really sure what it means on that page when it says that it does not involve experimentation on human participants.

    On page 9 it says that the DWP was funding a White project with Dr WT Hamilton & Ms JM Thomas: "A case-control study of the incidence, predictions and associations of the general practitioners record". I'm not sure if I know what that is, or if I knew of the DWP having funded this earlier White work.

    I skimmed over a lot that seemed to be the same as documents already made public, eg the CBT manual co-authored by Wessely.

    p104 talks about the involvement of the Clinical Trials Unit directed by Wessely.
     
    Esther12, Feb 8, 2018
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  4. JohnTheJack

    JohnTheJack Moderator Staff Member

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    JohnTheJack, Feb 8, 2018
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  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    Their 'consumables' costs are on p19, with some bits of minor interest. [edit: I should add that these were just proposed costs, not confirmed ones after the trial had taken place]

    Has Action for ME consultancy costs at £4,312.

    Also, three payments of £15,080 for a redacted cost - payment to the three Principal Investigators?

    £30,030 to the CTU for database/randomisation.

    £1,800 on Birthday/Christmas cards.
     
    Last edited: Feb 9, 2018
    Esther12, Feb 8, 2018
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  6. James

    James Established Member (Voting Rights)

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    James, Feb 8, 2018
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  7. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Here is the study or one of them.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1079668/

     
    Dolphin, Feb 9, 2018
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  8. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Sure. It would be interesting to see that. It had also occurred to me to ask AfME. Though I have a feeling that their idea of 'moving on' is to keep everything to do with their involvement as hidden as possible.

    I think that may be difficult as they weren't in fact anything to do with the trial.

    My understanding is that they were not part of the file (and hence not redacted).

    No, that wouldn't be redacted. My guess would be that those payments were not in fact made, or were made to someone other than those named in the application.

    It is interesting about the AfME consultancy. And that they sent the trial participants birthday and Christmas cards. Waste of money.
     
    JohnTheJack, Feb 9, 2018
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  9. Valentijn

    Valentijn Guest

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    They probably had some spare cash on hand after hawking the actometers :p
     
    Valentijn, Feb 9, 2018
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  10. Adrian

    Adrian Administrator Staff Member

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    Also the costs on actiwatch are listed (and software) which they then abandoned as an outcome.
     
    Adrian, Feb 9, 2018
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  11. Joel

    Joel Senior Member (Voting Rights)

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    Wessley as collaborator? Well that's a new revelation. Even above he forgot to mention that he had been involved in study design or something like that (I forget the exact words) which was mentioned somewhere else - in the thank you list of one of the PACE papers?
     
    Joel, Feb 9, 2018
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  12. MEMarge

    MEMarge Senior Member (Voting Rights)

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    May be worth contacting the Chair of Trustees direct, rather than SC or general AfME email.
    Have sent Graham info on this @JohnTheJack as I know you two have worked on previous stuff.
     
    MEMarge, Feb 9, 2018
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  13. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Thanks, Marge.
     
    JohnTheJack, Feb 9, 2018
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  14. TiredSam

    TiredSam Committee Member

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    A testament to his modesty, I'm sure. What else?
     
    TiredSam, Feb 11, 2018
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  15. Keela Too

    Keela Too Senior Member (Voting Rights)

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    I was thinking about these Birthday and Christmas cards.

    What message was sent along with them?
    Did they include thanks to the participants for being part of such a great great trial?
    Did they tell participants how the therapies were proving such a success?

    I wonder.
    Does anyone know?
     
    Keela Too, Feb 11, 2018
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  16. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I went back to the MRC and checked some of the redactions. They said:

    • On pages 12 and 13 the name of a Research Assistant intended to work of the study has been redacted. Research Assistants are generally junior positions and the name has been withheld under section 40(2) of the Freedom of Information Act. The same person is named on pages 12 and 13.
    • The names redacted from pages 15, 16, 17, 18 and 19 all relate to named investigators and collaborators. The redactions should have been lifted in providing a revised version of the application form to you last week. We apologise for this oversight and a revised copy of the application form with these redactions removed will be sent to you shortly.


    I have now been sent a new version with some of those redactions removed.
    https://www.dropbox.com/s/gdcdwlj4kyq3x2t/R - PACE Trial application 150218.pdf?dl=0
     
    JohnTheJack, Feb 16, 2018
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  17. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I appealed the MRC's redaction of the AfME letter in support of PACE. In light of my complaint to the ICO, the MRC has reconsidered its decision and has now released the letter.

    It's not all that interesting. It seems to be simply that as long as pacing is included, Clark would support the application.


    ETA: 'AfMe' before 'letter'
     

    Attached Files:

    Last edited: Oct 25, 2018
    JohnTheJack, Oct 25, 2018
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  18. chrisb

    chrisb Senior Member (Voting Rights)

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    That letter seems quite helpful to Afme, but might be regarded as placing an onus on the researchers to give pacing a proper "run for its money".

    Everyone will no doubt have a view as to whether the duty was adequately discharged.
     
    chrisb, Oct 25, 2018
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  19. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I agree. I don't think in itself it puts AfME in a particularly bad light. The problem is that he/they seemed to think so long as pacing (or rather the PIs' definition of pacing) was included they'd support the trial to the extent they did. They should have looked more closely at the whole design of the trial.
     
    JohnTheJack, Oct 25, 2018
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  20. Joel

    Joel Senior Member (Voting Rights)

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    Well done JtJ. Nothing shocking in that letter but hopefully a lesson for AfME and other organizations not to be so willing and trusting in situations where they're asked to support such a thing in future. Seems very naive. I'd hope organizations are more professional nowadays and would scrutinize more carefully and attach appropriate conditions in similar circumstances. No idea if that's true or not.
     
    Joel, Oct 25, 2018
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