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FINE trial nurse training materials

Discussion in 'Latest ME/CFS Research' started by Dolphin, Nov 17, 2013.

  1. Dolphin

    Dolphin Senior Member

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    Tate Mitchell posted the following to Co-Cure https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1311b&L=co-cure&F=&S=&P=10014 :


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    maryb and Esther12 like this.
  2. Dolphin

    Dolphin Senior Member

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  3. Dolphin

    Dolphin Senior Member

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    Here's what one person said, which might give people an idea of what was involved:
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  4. Dolphin

    Dolphin Senior Member

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    Esther12 likes this.
  5. Dolphin

    Dolphin Senior Member

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    Some comments on it from Twitter:
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  6. biophile

    biophile Places I'd rather be.

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    Not only "no wonder it didn't work", but also, no wonder that many nurses perceived patients as "the bastards that don't want to get better" when the inaccurate therapy model was failing to deliver.
    beaker, maryb, taniaaust1 and 3 others like this.
  7. Firestormm

    Firestormm Guest

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    Must admit that I thought the FINE Trial failure would have prevented further training for nurses - not that I have ever come across a nurse in my time with ME. Nurses are hard enough to come by when in hospital emergency departments let alone ME Services. Still, I'll have a read of the manuals. Does anyone know who exactly receives this training?
  8. Esther12

    Esther12 Senior Member

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    I've not read it yet, but I think that it was training related to the FINE trial.
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  9. taniaaust1

    taniaaust1 Senior Member

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    Its exactly the kind of stuff I thought they would be being taught.
  10. Valentijn

    Valentijn Activity Level: 3

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    One of the slides: "Try not too rest too much on a bad day (a gentle walk can help reduce symptoms)"

    :eek:

    :confused:

    :rofl:
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  11. alex3619

    alex3619 Senior Member

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    Well I do get fewer symptoms if I have a gentle walk on my favourite computer game. My avatars can walk whole miles! In real life, sadly, even getting out of bed is near impossible on a really bad day.

    FINE advice was for mild patients though, and I wonder if the nurses even know about severe ME? Aside from occasional one line indoctrinations?
    Valentijn likes this.
  12. Firestormm

    Firestormm Guest

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    I haven't either - probably wont bother now. I think this has been circulated before but might be wrong. If it was a manual from the Trial it would make sense - but it's on the 'net now as being a current diktat applicable to nurses today.

    Not sure that's correct. Hence my query. There are 'training' videos and resources elsewhere for the medical profession, but I hadn't seen anything for nurses particularly: hard to know when/where nurses feature in ME-world of NHS...
  13. Esther12

    Esther12 Senior Member

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    I think that FINE has only just released these now, so have not been seen before (they're not familiar to me), and they're just written in that diktat style as that's the way the researchers involved are.
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  14. kaffiend

    kaffiend Senior Member

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    I glanced through the slides and was really struck by the certainty, without reference to any study, with which they make statements about what patient responses will be.

    It's creepy - they're indoctrinating, rather than training, a fleet of workers who are not encouraged to think critically about the information.
    Valentijn, biophile, Roy S and 3 others like this.
  15. Esther12

    Esther12 Senior Member

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    And if you don't like that then you're antipsychiatry or stigmatising mental health issues!

    They have a really disturbing faith in their right to decide what thoughts are appropriate for others to hold, without being concerned with what the evidence actually shows.
  16. Dolphin

    Dolphin Senior Member

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    The FINE Trial was initially envisaged just for severe patients. It expanded who it included. But did include severe patients (it was done in people's homes).
    Last edited: Nov 19, 2013
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  17. biophile

    biophile Places I'd rather be.

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    Some of this stuff is bordering into malpractice. Nothing really new that we have not seen in other similar materials.

    They certainly would be more more emotionally distressed and impaired after reading this training material and/or having to endure some of the advice in practice.

    No references of course, just assumptions about CFS symptoms.

    I think most patients are more worried about the impact of post-exertional symptoms on function and quality of life than hypothetical 'damage' of the body, but this mob like to frame it as hypochondria. Post-exertional symptoms can cause relapses which significantly worsen function and quality of life for months at a time, that is why we "worry".

    Tell that to patients whose lives have been destroyed from too much activity or exercise during the earlier stages of illness. How are FINE defining harm exactly? A patients' life being affected by activity and exercise is harmless as long as there is no objective evidence on routine testing? Reminds me of PACE, adverse effects of exercise are not significant unless they result in massive drops in function for several weeks at a time, therefore CBT/GET are "safe".

    If only that was true.

    Did a SINGLE patient achieve this in the FINE Trial?

    Don't trust them.

    Trying to take away my critical nap time, especially when ill? Fuck off. No thanks. Whether or not daily rests and naps affect nighttime sleep and/or overall condition, is an individual variable and should not be generalized like that.

    For many of us, most of these become worse after regular exercise!
    Last edited: Nov 22, 2013
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  18. Bob

    Bob

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    Reading all of that, it's very clear why the FINE trial failed!
    They have utterly misinterpreted every aspect of the illness.
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