The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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Poor sleep quality is associated with greater circulating pro-inflammatory cytokines and severity an

Discussion in 'Latest ME/CFS Research' started by RogerBlack, Jan 28, 2017.

  1. RogerBlack

    RogerBlack Senior Member

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    http://www.jni-journal.com/article/S0165-5728(16)30449-0/abstract
    I do wonder if the appropriate drugs to help sleep could reduce severity a little, though poor sleep is clearly both causal and caused.
     
    Last edited: Jan 28, 2017
  2. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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  3. *GG*

    *GG* Senior Member

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    I do pretty well, been on Remeron since 2009. I wake up feeling better than before, not great, but better!

    GG
     
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  4. soti

    soti Senior Member

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    zolpidem has been my "miracle drug" (20 to 50 on the Bell scale)
     
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  5. *GG*

    *GG* Senior Member

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  6. M Paine

    M Paine Senior Member

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    Low dose amitriptyline (20mg in my case) and Ibuprofen made a profound difference to my sleep. At my worst, I was waking/restless up 25+ times a night. As soon as I started low dosing both an NSAID (Ibuprofen) and a tricyclic (amitriptyline), my sleep and health improved ever since. It's a slow recovery, but I'm positive that improving sleeps helps other disease outcomes associated with ME.

    [​IMG]
     
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  7. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Finally figured out how to use sci-hub. Here's the full paper:

    Poor sleep quality is associated with greater circulating pro-inflammatory cytokines and severity and frequency of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) symptoms in women
    http://dx.doi.org.sci-hub.cc/10.1016/j.jneuroim.2016.12.008
     
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  8. Murph

    Murph :)

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    I've always wondered about the precise definition of "unrefreshing sleep" in the diagnosis of ME/CFS.

    I find it hard to identify with the symptom, because I struggle to interpret it. I've had sleep problems, I sleep for ages, I wake up feeling groggy and it obviously doesn't cure me or solve PEM. But if I don't sleep, I go straight to symptom hell. And if I don't sleep when I have PEM the PEM gets worse.

    It's obvious to me that sleep is having some sort of positive or arguably "refreshing" effect. So I struggle to agree with the idea that my sleep is unrefreshing. Perhaps I'm interpreting it too literally?
     
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  9. Mary

    Mary Senior Member

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    I've had the same thought about the concept of "unrefreshing sleep". I'm worse off if I don't manage to get some decent sleep so it obviously is doing something beneficial. My guess is they mean that sleep doesn't take care of PEM or other ME/CFS-related fatigue, whereas with a normal person (it's been so long, hard to remember what that was like!), anyways with a "normal" person, if they're tired when they go to bed, they can wake up bright and chipper - the sleep takes care of their fatigue, whereas it does nothing for PEM, etc.

    I think the definition of ME/CFS needs some tweaking by knowledgeable experienced (those who have experienced it, not doctors) people.
     
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  10. TiredSam

    TiredSam The wise nematode hibernates

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    I think it might be a level thing - when my ME was worse I went to bed feeling exhausted, headache, stomach trouble etc and woken up 7 hours later feeling exactly the same, then dragged myself out of bed for another round - for days, weeks and months, permanently feeling like crap and getting no relief from sleep. Now I'm considerably improved my sleep is normal and I can't identify with "unrefreshing sleep" any more, I go to bed tired and wake up feeling like I've had a good night's sleep and am wide awake for 2-3 hours as long as I don't do much.
     
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  11. soti

    soti Senior Member

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    I see Leonard Jason's work in this vein, as translating what patients say into questionnaires that can be trusted by doctors. Otoh, when I took their latest survey I found the presuppositions of a lot of the questions problematic. So there's lots of room for improvement I think.
     
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  12. RogerBlack

    RogerBlack Senior Member

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    I'd say unrefreshing sleep has to be taken in context with normal experience.

    The normal experience for most people is that generally (neglecting muscle soreness or overtraining effects) sleep returns them to a state where their ability to do things is limited only by their muscles, aerobic condition and other normal factors.

    For most people with CFS, this would pretty much be the definition of cured.

    If I am not in a severe state of PEM, I also wake up somewhat refreshed - but this is very far from normal fitness.
    I'm unsure of a nice term for this though.
    'un-totally-refreshing' is ridiculous.

    Perhaps something like 'Unrefreshing sleep, where your condition in some or all of the day is significantly affected by what happened before you went to sleep', might capture it better.

    A normal person would expect to be able to perform aerobic exercise that would not be enough to cause muscle soreness due to overwork, and to do this the next day without any problem.
     
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  13. lansbergen

    lansbergen Senior Member

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    Me too
     
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  14. Woolie

    Woolie Senior Member

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    Isn't this one of these cause-effect confusion things? Does poor sleep quality lead to high levels of cytokines? I expect its the other way around - high levels of cytokines really mess with your sleep.

    What worries me is that if researchers interpret this as poor sleep leading to cytokine increases, that could support the behavioural, Crawly-esque sleep management practices. Or worse still "all that worry about having an actual illness is affecting your sleep and that's what causing your body to mess up.... gotta sort out you beliefs and behaviours and all will be well".

    Still no harm in improving your sleep however you can. Its the bottom line for me. The one thing I can control (which I do by shamelessly taking lots of drugs!).

    Edit: those drugs are 20mg amitriptyline and a fragment of zopiclone (imovane) when I wake early in the morning, plus antiinflammatories like @M Paine (naproxen in my case).
     
    Last edited: Jan 31, 2017
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  15. lansbergen

    lansbergen Senior Member

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    Yep
     
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  16. RogerBlack

    RogerBlack Senior Member

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    I would be astonished if the causation doesn't go both ways.
    This may even be an area in which psych methods might help at least some get more sleep (drugs are of course another option).
    Symptoms cause difficulty in sleeping, and sleeping through the night. Lack of sleep causes some worsening in overall fatigue status and makes PEM post-activity that little bit more likely.
     
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  17. msf

    msf Senior Member

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    I believe Trazodone works in my case (and perhaps that of others) by inhibiting the release of proinflammatory cytokines in response to the higher levels of LPS in my bloodstream. There was something on Cort´s blog about this. I have tried a few other sleep aids, but even when they knocked me out (Zopiclone) I wouldn´t feel the benefit the next day.
     
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