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Mindfulness-based cognitive therapy for people w/ CFS still experiencing excessive fatigue after CBT

Discussion in 'Latest ME/CFS Research' started by Dolphin, Sep 5, 2013.

  1. Dolphin

    Dolphin Senior Member

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    Full text is free here: http://onlinelibrary.wiley.com/doi/10.1002/cpp.793/full

    As the underlined bits show, they're fishing to be able to have a bigger trial.

     
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  2. Dolphin

    Dolphin Senior Member

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    The Lancet PACE Trial paper was one of the two sources for the 30%-recover-with-CBT claim, although they only say this indirectly:
    The 30% figure from the Lancet paper wasn't supposed to represent recovery, although authors said things in such a way that some people might interpret it that way.
     
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  3. Dolphin

    Dolphin Senior Member

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    MBSR=mindfulness-based stress reduction MBSR


     
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  4. Dolphin

    Dolphin Senior Member

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    How the two knit together, and the theory behind why they think MBCT might help. Can't say I'm that convinced of this as a mainstream therapy for CFS that, along with CBT, is considered sufficient to treat the condition:


     
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  5. Firestormm

    Firestormm Guest

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    You know when I did a 13 week course on CBT and Mindfulness a couple of years ago, those in charge were clear - as were the patients at the end - "This will not remove your illness [I was the only one there with ME - there were people with cancer (pre- and post treatment), physical injuries causing chronic pain, MS, and other things including chronic depression] but what we hope it will do it put your illness into perspective and provide you with a better sense of control."

    And it did - for me at least. All this crap about CBT and/or Mindfulness 'curing' people is, well, crap. It can help restore what is lost through despair and struggling to come to terms with a chronic condition - especially one for which there is no specific treatment or understanding. It can teach coping skills and strategies. It ain't no frickin' cure!

    People can and do feel better after having a natter and learning that they aren't alone; picking up some strategies and management plans. People will even say that 'it helped'. It is I have no doubt - possible to take onboard the principles of Mindfulness and CBT to such an extent that you can effectively side-line your health more readily: and pursue other things more successfully than before.

    But it ain't no frickin' cure - unless perhaps you are diagnosed solely with e.g. depression or somesuch: and then I can see it being perceived as such by patient and doctor.
     
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  6. Dolphin

    Dolphin Senior Member

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    The joys of dealing with people:

    Some ME support group leaders can't do this. I don't know what exactly "interpersonal difficulties" are specifically e.g. how would one test for them.
     
  7. Dolphin

    Dolphin Senior Member

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    For a free course, quite a lot of people didn't take up the offer:



    *Later it says:

    so one can work out from this how many people don't have severe fatigue after CBT.
     
  8. madietodd

    madietodd Senior Member

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    I agree, @Firestorm. I've practiced mindfulness meditation for almost 35 years, and I got sick 25 years ago. It has helped enormously with managing my relationship with this illness. It has absolutely helped.

    But it has no effect on any physical symptoms - PEM, insomnia, memory loss etc. If they asked the question right, they could get me to say it helps with fatigue, but that's because I'm making up for some sleep deficit by laying down and being absolutely still for an hour or 2 a day.
     
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  9. Dolphin

    Dolphin Senior Member

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  10. Dolphin

    Dolphin Senior Member

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  11. Firestormm

    Firestormm Guest

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    Doesn't play well with others? :)

    Seriously, some folk do have anger issues and don't like to be confronted. Then there's those who really struggle in groups or crowds. I can think of a few people who would certainly rather not be in 'group therapy' though they'd also want to punch anyone for claiming they had 'interpersonal difficulties' :)
     
  12. Dolphin

    Dolphin Senior Member

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    All of the outcome measures were self-reported - no objective measures:




    which I suppose is reasonably good (if one believes this is an accurate measure, which I question with man interventions).



    The improvement here is less impressive than for the Chalder Fatigue Scale.
     
  13. Dolphin

    Dolphin Senior Member

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    Yes, I'm not disagreeing with what they did or what you said. Just wondering about the specifics.
    Also thought it was worth noting as an interesting issue in itself which doesn't get mentioned much when talking about running groups (although complaining about individuals does, just no title is put on their behaviour).
     
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  14. Roy S

    Roy S former DC ME/CFS lobbyist

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    a) House of Cards
    b) The Emperor's New Clothes
    c) [please insert other]
    d) all of the above
    e) none of the above
    f) Beam me up, Scotty. This planet sucks.
     
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  15. Dolphin

    Dolphin Senior Member

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    Or perhaps simply a case that single-item questions on satisfaction and the like often get high ratings.

    Mindfulness instructors might not be the most objective sources .
    Also, my guess is that a lot of the benefits are more psychological, rather than "physical", but the authors aren't making such a distinction.

    [Aside: There's info on "demand characteristics" here: http://en.wikipedia.org/wiki/Demand_characteristics ]
     
  16. Dolphin

    Dolphin Senior Member

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    Look what we have to look forward to:
     
  17. Dolphin

    Dolphin Senior Member

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  18. Firestormm

    Firestormm Guest

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    Let's spend some money on a trial comparing CBT with Mindfulness with Paul McKenna's hyptonism on stress with eating a banana! :)

    I know it's all 'science' of a sort and these folk are in pursuit of the 'best fix' but really. For the results they are getting - despite fixing them - is it really worth it? Talk about trying to justify an existence.

    When someone embraces me, or even talks to me, and I feel better: I don't know why. I just do. I don't need a bloody science paper trying to determine the best way of embracing, or talking.

    Enough. I need to watch a film. I don't know why it makes me feel better. It just does. I might conduct a few experiments. I might ask for a large grant :)
     
  19. jeffrez

    jeffrez Senior Member

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    When CBT doesn't work, the obvious answer is... more CBT!! :lol:
     
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  20. jeffrez

    jeffrez Senior Member

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    When all you have is a hammer, everything looks like a nail. ;-)
     
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