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Cognitive behavioural therapy for adults with dissociative seizures (CODES): a ... multicentre, randomised controlled trial (2020) Goldstein, Chalder

Discussion in 'Other psychosomatic news and research' started by Sly Saint, May 22, 2020.

  1. Sid

    Sid Senior Member (Voting Rights)

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    How convenient.
     
  2. cassava7

    cassava7 Senior Member (Voting Rights)

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    While this practice remains problematic, setting a minimal period of time before sharing the data of a large study is not unusual as it gives the authors enough time to publish all of their findings. I had not yet seen a group of researchers set an end date, though — this is worrying.
     
    RedFox, MSEsperanza, Hutan and 4 others like this.
  3. Sid

    Sid Senior Member (Voting Rights)

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    Yes. I’ve never seen an ‘expiration date’ set like this.
     
  4. rvallee

    rvallee Senior Member (Voting Rights)

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    12,464
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    It's weird how a cornerstone of science is peer review and yet the idea of post-publication peer review is not a thing, it's even widely known that journals and editors don't care much about errors after publication unless there is backlash to their reputation. Post-publication peer review should be even more significant than pre-publication, it should be the main form, otherwise errors just creep up, never corrected. Flawed research just keeps getting cited, almost like it's on purpose.

    You can't even do that in the video game industry. If your game has bugs post-launch, you fix them, provide a patch. Otherwise people will not buy from you again. But it's different when you are a complete monopoly on a completely inelastic service, one where people don't have a choice, there is nothing else. The demand for healthcare is infinite, so they can simply neglect a significant % of their duties and still have too much work.
     
    Amw66, Arnie Pye, Mithriel and 3 others like this.
  5. Sean

    Sean Moderator Staff Member

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    Should be banned outright. A core condition of formal peer-reviewed publication must be that the data is made permanently available to the public (with appropriate anonymity safeguards). The cost of doing so is trivial these days. No excuses.

    IIRC, PACE has a compulsory data retention period of 20 years. I am concerned about what happens after that, given that the authors have proved very reluctant to share any more than ordered to by a court.

    It is outrageous, and very dangerous, that they can get away with this. The rest of medicine and science needs to wake the hell up to what is happening here, and object very loudly and urgently. :mad:
     
    Last edited: Nov 25, 2022
    RedFox, MEMarge, Arnie Pye and 7 others like this.
  6. ToneAl

    ToneAl Senior Member (Voting Rights)

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    Adelaide Australia
    Arnie Pye, MSEsperanza and Sean like this.
  7. ToneAl

    ToneAl Senior Member (Voting Rights)

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    Location:
    Adelaide Australia
    I had a quick listen so the patientbwas having very different seizures from the normal and may have never picked up by eeg.
    Does that mean if certain tests aren't done due to doctor bias or not having knowledge about certain types of uncommon or rare disease that have uncommon symptoms.
    We can safely say that the whole ideal or construct of fnd is useless and unhelpful if further tests are denied or not given or technology is not capable of detection or the doctor is completely incompetent, starved of time or doe not do a complete history.
    The patient is trapped in this horrible nightmare because of doctor incompetence and therefore they should wipe clean fnd from the medical system and sometimes be frank and say I do not know.
     
    Amw66, Joan Crawford, Sid and 3 others like this.
  8. ToneAl

    ToneAl Senior Member (Voting Rights)

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    129
    Location:
    Adelaide Australia
    Looking at all the authors it's the who who of fnd. Since the trial was completely crap and invalid. Does that imply that the complete ideal of fnd and associated treatments are crap and invalid especially from Dr Stone and gang
     
    Mithriel and Trish like this.
  9. Sid

    Sid Senior Member (Voting Rights)

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    Just stumbled on this. After the primary outcome at 52 weeks showed no difference between the groups, they’ve since published a paper showing there was a difference at 6 months. I should note that seizure frequency, while a more objective outcome than various self-report questionnaires, were still based on self-report and thus prone to bias. CODES was an open-label study.

    https://pubmed.ncbi.nlm.nih.gov/35228117/

     
  10. Sean

    Sean Moderator Staff Member

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    Studies only providing short-term follow-up data should be interpreted with caution.

    :speechless:
     
    Sly Saint likes this.
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    unless they happen to be our studies, in which case we can interpret them however suits us.
     
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