Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
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Treatment of insomnia reduces fatigue in CFS in those able to comply with the intervention

Discussion in 'Latest ME/CFS Research' started by Dolphin, Sep 7, 2016.

  1. Dolphin

    Dolphin Senior Member

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  2. Dolphin

    Dolphin Senior Member

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    My impression is that 44% (or is it 56%?) is a fairly low level of acceptability. So not sure "acceptable" should be use regarding this treatment.
     
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  3. Dolphin

    Dolphin Senior Member

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    I would have thought that "ability to comply" is not the only reason somebody might find a therapy unacceptable.
     
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  4. Esther12

    Esther12 Senior Member

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    Ugh. Just the title is funny.

    Not a good sign that Newton put her name on this imo. Utterly unsurprising that people like Gotts and Deary did.
     
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  5. dancer

    dancer Senior Member

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    Sounds like the Borg. "Resistance is futile." You must comply. Ugh is right.
     
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  6. lnester7

    lnester7 Seven

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    I have stage 4 issues (staying sleep) no amount of hygene can help me stay sleep :(
     
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  7. alex3619

    alex3619 Senior Member

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    My understanding is that severe circadian issues, like non-24, might in some cases respond but in the long run all treatments fail. All of them. Of course this is for a general understanding, and may or may not apply to ME or CFS, and may or may not be accurate. I read this some time ago, somewhere.
     
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  8. Skippa

    Skippa Senior Member

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    Oh hi, I have excellent sleep hygeine and rarely wake midway through.

    Doesn't work for me. Next!
     
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  9. IreneF

    IreneF Senior Member

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    If you find that sleep hygiene helps you, perhaps your issue was with sleep and not CFS/ME at all.

    I have intractable sleep problems (delayed sleep phase syndrome) along with my other symptoms. I would like to have a more typical sleep pattern, but I haven't been able to achieve it. I don't often have insomnia, however.
     
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  10. alex3619

    alex3619 Senior Member

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    Ditto. In fact if I follow my altered circadian pattern I rarely get insomnia. I get insomnia when I try to fight it.
     
  11. valentinelynx

    valentinelynx Senior Member

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    Ditto, ditto. Severe sleep reversal. Sleep well when I go to bed in the morning and sleep all day.
     
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  12. IreneF

    IreneF Senior Member

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    Yes, been there. Very comfortable for me, with the exception of not being able to interact with anyone in my time zone.
     
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  13. daisybell

    daisybell Senior Member

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    Strategies to reduce attrition and increase adherence might be best addressed by actually listening to patients perhaps?? The majority of us actually know what works for us already.... I know that's a really radical suggestion. Guess what - when we feel worse, we sleep more poorly. Rocket science. :bang-head:
     
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  14. snowathlete

    snowathlete Not an ol' sleazebag

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    Why subjective measures when sleep can be measured objectively?

    I bet there's not a single pharma treatment for insomnia which only uses subjective measures. I know monitoring someone in a full sleep study is expensive, but there are lots of tools that can be used now even in small studies like this. Seems so obvious.

    edit: and with so many dropping out because they found it unacceptable, you have to wonder if those who are left are more likely to be over generous in their self reporting.
     
  15. user9876

    user9876 Senior Member

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    They may just think its not worth the energy. It seems like those not able to complete the study were more severe.

    It looks like it is not a controlled trial and open labelled so we would expect the results to be subject to reporting biases.

    When they quote improvements I assume that is on those completing the trial but it is not clear from the abstract
     
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  16. Bob

    Bob

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    What a load of trash! And a potentially abusive/coercive title.

    It's an open-label trial using self-report measures, without a control arm.

    7 out of 16 patients completed the trial.

    A total of 5 out of 16 completed the trial and improved in sleep measures. And this is without a control arm of the study!

    56% (out of 7? = 4 participants?) thought the intervention was acceptable. (But it's not clear how many responded to the question.)

    Ditch it!!!

    No it isn't! Read your abstract!
     
    Last edited: Sep 8, 2016
  17. user9876

    user9876 Senior Member

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    Since it is not clear what the acceptance rate is this suggests the abstract is poorly written. It is not clear if this refers to all patients or just the 7 who completed. Equally it is not clear whether improvements were on the 7 or measured overall.

    Seems like a shocking lack of clarity in the abstract
     
  18. snowathlete

    snowathlete Not an ol' sleazebag

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    Has to be the worst things about science nowadays, that regardless of whether a study is well designed and conducted, regardless of the result, the results get spun as something other than what they are. This study is a failure in several ways that are obvious from the extract (even those many facts are not clear from the extract), yet they claim success.
     
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  19. user9876

    user9876 Senior Member

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    Success should of course be the increase of knowledge which includes both positive and negative results.
     
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  20. snowathlete

    snowathlete Not an ol' sleazebag

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    Indeed, what I meant was they claimed the study was a success (i.e. the intervention worked) when it didn't. It would have been a success for science if they presented the results more objectively, even though the results were negative (i.e. the intervention didn't work).
     
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