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Investigating the effectiveness ... of FITNET-NHS compared to Activity Management to treat paediatric CFS/ME, 2018, Crawley et al. Protocol

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by hixxy, Feb 24, 2018.

  1. Barry

    Barry Senior Member (Voting Rights)

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    That is really interesting. It sounds like classic BPS logic, where their testing for the presence of mood disorders is predicated on the assumption that the collection of symptoms the are querying can only be due to mood disorders, and not physical causes.

    To me it feels worthy of further discussion here. Do you have any links to some of these questionnaires?
     
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  2. Esther12

    Esther12 Senior Member (Voting Rights)

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    Also, what's the point of having a 'stop criteria' if you just ignore it?
     
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  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    they obviously didn't stand on circles for the stop criteria to work....
     
  4. Esther12

    Esther12 Senior Member (Voting Rights)

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    I was just going to post something else in this thread, and finding it made me wonder if asnyone had an answer to this question...
    Also, it seems the Bristol FITNET pages have been updated, including a new FAQ with their interpretation of the previous FITNET study:

    http://www.bristol.ac.uk/academic-c...entdisability/chronic-fatigue/fitnet-nhs/faq/

    The old FAQ included a link to Crawley's TEDx talk, that was taken down after it was pointed out she'd breached their guidelines and made false claims, but that old FAQ is still available here: https://web.archive.org/web/2018063...entdisability/chronic-fatigue/fitnet-nhs/faq/
     
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    NICE guidelines
     
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  6. Amw66

    Amw66 Senior Member (Voting Rights)

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    Remember though that severe in paediatrics us being able to attend school for an hour.
    Otherwise its classed as PRS
     
  7. dave30th

    dave30th Senior Member (Voting Rights)

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    Sorry just catching up to this, it escaped my attention earlier. The change in interventions seems to be a doubling of the sessions for Activity Management from three initially to six later on, from the changes in the descriptions on the registration. I haven't seen an explanation for that change.
     
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  8. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Just saw this thread about the protocol's never ending amendments and thought I'd link here:

     
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  9. rvallee

    rvallee Senior Member (Voting Rights)

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    This is just so damn bizarre and ridiculous:
    They self-select for a % of specific "co-morbid". Then find they have too many of those based on an arbitrary target. Why have a target at all when it should be an exclusion factor? Also ridiculous to speak of standard deviations and power % when they are using biased unreliable questionnaires that have little to do with the illness. They don't even get round-number accuracy, even within several points of an accurate number, and are trying to argue for several significant digits? Who the hell approves this garbage?

    So after 3 years they are unable to meet a low target that itself represents a tiny miniscule % of the patient population (though of course they select way out of the ME population anyway so those numbers are even worse) and can't even get to half of that and their conclusion is that instead of accepting that this is a worthless pursuit they give it more time?

    That this gets funding and continued approval over credible research is complete abdication by the relevant research authorities.
     
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  10. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Last edited by a moderator: Oct 15, 2021
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  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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