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Closed Forward ME Group CBT/GET Survey - Tell NICE your experiences

Discussion in 'Recruitment into current ME/CFS research studies' started by Gecko, Jan 11, 2019.

  1. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Suspicious perhaps, rather than paranoid.

    Possibly they might have but even if they did then I would be surprised if they could muster enough numbers to tip the results appreciably in their favour. And there would be a good chance that the patient community would have heard of attempts to recruit people to complete the survey in a pro-CBT and GET way. Additionally, I'm sure that there will be patients who, in trying to be helpful, have filled it in when they weren't eligible to do so, so the chances are that fake participants will, at worst, cancel each other out.
     
    MEMarge, ukxmrv and Trish like this.
  2. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I would try not to worry because worrying won't do any good. Why shouldn't therapists encourage participants to fill in the survey, I would if I was them.

    Same problem - subjective questionnaire. There will still be harm reported.
     
    MEMarge and Andy like this.
  3. Trish

    Trish Moderator Staff Member

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    You're right on all points. I guess I was just concerned that the NICE committee are using an unreliable instrument to gather evidence that could be skewed in all sorts of ways.

    I agree therapists could ask participants to fill in a survey, but the effects of GET (and CBT) are often not realised until after the therapy is completed and the participants find that going on doing what they were told to do and increasing activity is making them sicker.

    Therapists have a crafty system of getting you to cut back your activity significantly to find your baseline, so that by the time a series of sessions is completed the participant may not even be back up to the level of activity they were at the start, so may be coping OK, at least temporarily. It's when they get home on their own and go on adding activity as they have been told to do that the cumulative and longer term bad effects may kick in. By which time they have filled in a questionnaire saying it was helpful.

    But as you say, there is nothing we can do about it, so there's no point worrying.
     
    pteropus, Skycloud, MEMarge and 6 others like this.
  4. rvallee

    rvallee Senior Member (Voting Rights)

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    Considering that the services have been dispensed for a full decade and that there is supposed to be data available of far greater quality and accuracy (how else could the guidelines be rubber-stamped in 2017 otherwise?), I find it suspicious that a survey is used at all. It keeps the debate hypothetical even though it's been official policy for a long time.

    Because the reality of controversial services overflowing with unofficial (simply because the process doesn't exist to receive them) complaints of harm not having any proper data for a full decade is exactly the kind of malicious incompetence that should lead to a complete shutdown and a whole lot of medical licenses revoked with extreme prejudice.

    None of this has anything to do with basic research, nothing in this research can even pretend to advance understanding of this disease. This is real-world clinical advice being dispensed to tens of thousands of people. If the data don't exist for how well it performs then fire everyone ASAP because it is systemic malpractice.
     
  5. Andy

    Andy Committee Member (& Outreach when energy allows)

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  6. Cheshire

    Cheshire Moderator Staff Member

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    Thread about the results here.
     

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