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FITNET-NHS Esther Crawley - 5th protocol out now

Discussion in 'PsychoSocial ME/CFS Research' started by daftasabrush, Feb 7, 2019.

  1. daftasabrush

    daftasabrush Established Member (Voting Rights)

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    How many protocols does this harmful GET trial need exactly? There's 5 on the website now.

    Is Action for ME supporting this street merging with AYME? They have a clear statement against GET now.

    Selected GPs are now sending out letters on behalf Crawley et al for any kids aged 11+. For 16 or 17 year olds "invitations" go straight to the kids rather than parents. Since the protocol involves including reasons for refusal, does that mean GPs pass on data directly? Surely that can't be allowed?

    Will GPs be informed Crawley is under investigation for ethics violations at Bristol?

    I haven't managed to figure out all the differences from earlier protocols.

    Obviously still the Oxford criteria.
    Also only looking for those "recently" diagnosed...no doubt to bump up recovery rates.

    £900,000 to manipulate and harm hey more children. ;-(

    https://www.journalslibrary.nihr.ac.uk/programmes/hta/14192109/
     
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  2. Dolphin

    Dolphin Senior Member (Voting Rights)

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    At the end, there is a section:
    which goes through the various changes for the different protocols.
     
  3. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Crawley uses the NICE-criteria. From the protocol:
     
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  4. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    There is another issue here. If the children and Young people being contacted "For 16 or 17 year olds "invitations" go straight to the kids", -if they have a diagnosis and are, or have been out of school, other agencies will be involved and they may come under the heading of 'vulnerable" or 'disabled' young people.

    Then there is then the issue of Mental capacity and Deprivation of Liberty( DOLs) complication and potential.
     
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  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Apart from saying that MJW had quit, they don't appear to have amended their info re AYME.
    Don't they have to inform anyone that they no longer have the backing of a patient charity?
    Or maybe they do?

    And the APPG no longer exists(?) and the MPs who are part of the CMRC(?)
    But the last line is the most concerning.
     
    Last edited: Feb 7, 2019
  6. Adrian

    Adrian Administrator

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    From the amendment list

    Not quite sure what this means but I wonder if it is the trick of using pilot patients in a full trial?
     
  7. Trish

    Trish Moderator Staff Member

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    Is it normal for a clinical trial protocol to discuss plans for dissemination of the results beyond scientific journal publication?

    From what I remember of looking at FITNET, and I don't have the energy to go back and look at it and study the protocols, the trial is designed as a win-win, since it has no control group, but has two active treatment groups receiving different variations on internet supported GET/activity management/CBT. Whichever group comes out ahead in the results will be claimed as an effective treatment.
     
  8. Adrian

    Adrian Administrator

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    I suspect so I know with other government funded research they like to have dissemination plans to communicate the main ideas with a variety of different stakeholders through many sources.
     
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  9. rvallee

    rvallee Senior Member (Voting Rights)

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    Nice haul for someone who had claimed to have left the field because of all the "harassment".

    Seems instead she found a more easily abusable population, one that will comply and not complain, especially with threats of FII on parents.

    Science without a moral compass is bad for society. Always has. Always will.
     
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  10. rvallee

    rvallee Senior Member (Voting Rights)

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    PACE team made plans for the media blitz in coordination with the (totally neutral and objective) SMC and the Lancet during the trial, showing the results were pre-determined and would have had no impact on their conclusions. So I guess it's normalized now.

    This is carry-the-football "research", where success is defined merely by the act of successfully publishing something and the substance is irrelevant, only the conclusions, which can be anything they want to apparently, no matter what the data show.
     
  11. Lacey Diamond

    Lacey Diamond Established Member

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    It's important to note that their "activity management" is also an increasing regimen but not quite as rigid as GET. My daughter has had this and there is an expectation that she would try to increase 15 minutes of red activity every week if there is no set-back. Needless to say she reached a level of activity that she could no longer increase and that was the end of it. I have heard similar reports from other parents. They do not seem to be specifically stating what they mean by these interventions and then clouding the picture by renaming things.
     
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  12. obeat

    obeat Senior Member (Voting Rights)

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    Do you know if your daughter will be classified as " recovered" or improved ?
     
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  13. Tilly

    Tilly Senior Member (Voting Rights)

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    NICE have said that they do not give a criteria for diagnosis so how can she use it?
     
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  14. Tilly

    Tilly Senior Member (Voting Rights)

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    This is done more by the RCPCH and the police involvement and they only have to site possible emotional harm now as a reason. Withholding the chance of recovery is used as a possible emotional harm.
     
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  15. Amw66

    Amw66 Senior Member (Voting Rights)

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    So that was what the safeguarding seminar was really all about ?
     
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  16. chrisb

    chrisb Senior Member (Voting Rights)

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    One has to wonder whether, in this matter, they show "equipoise". Removing a child from parents and home also causes emotional trauma. How are the contrasting traumas evaluated and compared?
     
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  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    found this in a pdf relating to 9th World Congress of Behavioural and Cognitive therapies (Berlin July 17-20 2019).

    https://wcbct2019.org/Downloads/abstract-book-1.pdf


    anyone have a link to this paper? can't find a thread on it (only the recent one with Chalder, but this one is with Crawley).
     
  18. Andy

    Andy Committee Member & Outreach

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    I'd guess that as they say data collection is ongoing, it hasn't been published yet, but I don't know for certain.
     
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  19. Esther12

    Esther12 Senior Member (Voting Rights)

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    So they're looking at data as it comes in, rather than waiting til the trial is completed?
     
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  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    @dave30th
    Looks like it.

    I'm sure they will come up with some explanation as always.

    200 doesn't sound very many given how long it's been running and the cost (nearly £1M).(?)
     

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