Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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CBT in the treatment of CFS: A narrative review on efficacy and informed consent

Discussion in 'Latest ME/CFS Research' started by Dolphin, Sep 16, 2016.

  1. Dolphin

    Dolphin Senior Member

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    Kati, taniaaust1, Glycon and 19 others like this.
  2. Dolphin

    Dolphin Senior Member

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    I read this paper and like it.
     
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  3. AndyPR

    AndyPR Senior Member

    I take it then @Keith Geraghty hasn't gone over to the dark side by fully endorsing CBT as a cure for ME?? ;)
     
  4. medfeb

    medfeb Senior Member

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    Great paper. Lots of useful information and perspectives pulled together in one place. It highlights the problems with the evidence for and use of CBT in CFS. The one comment I'd add is the AHRQ Addendum finding that even that weak evidence virtually disappears if you exclude Oxford studies. Its remarkable how many different ways they "cooked the books" - patient selection, analysis methods, outcome measures, etc - to get the effect they wanted to see.
     
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  5. Tom Kindlon

    Tom Kindlon Senior Member

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  6. Hutan

    Hutan Senior Member

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    Thank you to @Keith Geraghty and Charlotte Blease. I can't access the full paper, but the abstract and conclusion look terrific. The informed consent angle is a great idea.
     
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  7. BurnA

    BurnA Senior Member

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    I can't access this paper but have a general CBT evidence query.
    Are all CBT trials as weak as PACE. I don't mean all the technical issues with PACE, I mean the lack of blinding, subjective outcomes and no proper control?
    At what point does evidence get classified as weak over no evidence?
    If a trial is fundamentally flawed to begin with can any conclusion be drawn , why would some evidence be classified as weak as opposed to not meeting required basic standards of clinical trial evidence?
    Tks for any feedback.
     
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  8. Esther12

    Esther12 Senior Member

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    Some CBT trials for eating disorders use weight as an outcome. Some psychosis trials use blinded assessment of symptoms (and these blinded trials report much worse results).

    Compared to other CFS CBT trials PACE is actually pretty good.
     
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  9. A.B.

    A.B. Senior Member

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    Poor choice of words. The bar was set so low that they couldn't have failed. That is unacceptable regardless of how much worse other studies are.
     
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  10. Valentijn

    Valentijn Senior Member

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    I've looked at some of the CFS papers used for NICE, and they're even weaker than PACE. Small, subjective outcomes, poor definitions, dodgy cohorts, no blinding, often no control group, etc.

    Some use objective secondary outcomes (VO2max, actometers), but either show 1) no improvement or 2) patients were normal to start with. Long term followups have the same problem as PACE, generally, with no sustained improvement and deliberate administration of different therapies to render the results meaningless.

    Of course, it's pretty much all the same people doing these studies, so the same flaws keep showing up.
     
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  11. Valentijn

    Valentijn Senior Member

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    Yes, but the thresholds had to be lowered to get the same good results they got from the even crappier studies. If PACE had stuck to the protocol, it would have been decent. That's why CBT and GET came out looking so bad, based on protocol-defined analyses.
     
  12. BurnA

    BurnA Senior Member

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    Thanks for all the feedback.

    So, if PACE is a 'good' example of a CFS CBT trial, I would be inclined to think they are all worthless based on my knowledge of PACE.
    So I am still wondering then, why is the evidence classified as weak as opposed to none.
    Wouldn't the easiest way to debunk CBT for CFS just be to throw out any trial without blinding that has only subjective measures no proper control and no long term follow up?

    In other words apply the same standard as we would for any treatment for other diseases.

    The reason I bring this up is the mantra that NICE wasn't based on PACE but so what if the other trials don't meet basic scientific clinical trial criteria. Surely it's a slam dunk.
    Why are lower levels of acceptance OK for CBT ?
     
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  13. Valentijn

    Valentijn Senior Member

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    My guess would be that it largely depends on who is involved in the NICE process for ME/CFS, and who is doing the actual trial evaluations.
     
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  14. BurnA

    BurnA Senior Member

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    Yes that's more than likely. Surely one (good?) way to advocate then is simply to ask for the same standards to be applied for ME as for prescribed treatments in other illnesses.
    The notion that there is weak evidence for CBT is nonsense to me if it based on flawed trials.
     
  15. Valentijn

    Valentijn Senior Member

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    I think there's an even simpler and more obvious problem: the Oxford criteria used in most of those trials does not reflect the diagnostic criteria used by NICE. How can NICE describe the disease one way, while relying on evidence from trials where the recruitment criteria are extremely different?
     
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  16. A.B.

    A.B. Senior Member

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    Patients should demand some control over the national research strategy for the illness, and once some power has been obtained, they should implement a series of rules that enforce high standards in research.

    We're fed up with exploitative junk science being forced on us. This research is supposed to help us.
     
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  17. BurnA

    BurnA Senior Member

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    Yes good point.

    I just spotted this tweet by @Keith Geraghty , he calls CBT useless, wonder why he couldn't or didn't use similar language in the Paper?

     
    CFS_for_19_years likes this.
  18. Hutan

    Hutan Senior Member

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    Yes, the quality of ME and CFS research is abysmal, with relatively few exceptions. I wonder if IACFSME or some other good organisation could maintain a database of published papers where it classifies the study, grades it on quality and notes some key things such as has the study been replicated? what criteria did it use for participant selection?

    Would that be too big a job to fund? Once there is a system and a coordinator/final arbiter, much of the work could probably done by volunteers.

    The database and updates would be a useful resource for researchers and government health institutions. Grading could create a powerful way to encourage improvements.
     
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  19. BurnA

    BurnA Senior Member

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    Just a comment,
    Ron Davis said he reviewed over a thousand ME CFS papers if I remember correctly, and he wasn't too impressed. I have a feeling that the papers that come out in the next 5 -10 Years will overshadow anything that has gone before. At least I hope so.
     
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  20. Large Donner

    Large Donner Senior Member

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    Take the actual treatments away and tell them AIDS is just a behavioral disorder and they are not ill and convince them to do more than they can then of course it f****** would!!!!

    How about telling AIDS patients via CBT to encounter more viruses, or diabetics to encounter more sugar, (in the same way CBT in ME is used to tell people to encounter more exertion) and tell me it doesn't cause harm and exacerbate the disease..

    The man is such a dummy!
     
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