Resting-state functional connectivity, cognition, and fatigue in response to cognitive exertion: a novel study in adolescents with CFS (2019) Josev

Discussion in 'ME/CFS research' started by Cheshire, May 20, 2019.

  1. MyalgicE

    MyalgicE Senior Member (Voting Rights)

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  2. lansbergen

    lansbergen Senior Member (Voting Rights)

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    The adolescents with Paediatric ME and CFS had slower reaction times before cognitive exertion and even slower after exertion.

    That could be key. Also in adults.

    In my case I noticed the more severe I became the slower it was.

    It graduly improved with taking the immunemodulator.

    A while ago I noticed not only I can respond more quickly but even my memory is much better. I responded very fast when somebody mentioned something from a long time ago. The memory came back in a split second.
     
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  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    From the MERUK write up it reads as though testing followed a 90mins exertion period - if delayed impact/ delayed energy availability (like PEM) is part of the illness profile would it not have been illuminating to have looked at a number of time points. 90 mins exertion may impact more significantly after a few hours/ next day/ 48 hours later.
    That may have been more interesting?
     
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  4. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Hi @lansbergen, can I ask which immune modulator you have been taking?
     
    Last edited by a moderator: Oct 7, 2019
  5. lansbergen

    lansbergen Senior Member (Voting Rights)

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    Levamisole
     
  6. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Thanks
     
  7. Hutan

    Hutan Moderator Staff Member

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    Just wanted to highlight this finding from the study again for the NICE review committee - @Keela Too; @adambeyoncelowe

    Fine if the guidelines suggest sleep hygiene issues are discussed if required, but it should be made clear that poor sleep hygiene is not an underlying cause of ME/CFS. Excessive focus on sleep hygiene, e.g. not using a laptop in bed, complicated bedtime rituals, from medical professionals doesn't make life easier and can easily feel like patient-blaming.
     
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  8. lansbergen

    lansbergen Senior Member (Voting Rights)

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    I think that makes it worse. To much strain.

    I just let nature take its course and my insommia disappeared with overall improvement.
     
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  9. Amw66

    Amw66 Senior Member (Voting Rights)

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    Sleep hygiene was a disaster - it panned out as less overall sleep and worry. Medical staff cannot understand that it will not work for everyone. Most recent appointment saw this rearing its head again with a patient blaming tone that sleep had never been addressed ( loud sigh)
     
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  10. Sisyphus

    Sisyphus Senior Member (Voting Rights)

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    That's an immunomodulator? I know nothing about it, Google sez (via WebMB, Mayo, etc) that it's, ahh, serious stuff, but says nothing about it being used to regulate one's immune system. ???
     
  11. lansbergen

    lansbergen Senior Member (Voting Rights)

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