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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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CBT treatment for a range of functional somatic syndromes: RCT (Schröder et al., 2012)

Discussion in 'Latest ME/CFS Research' started by Dolphin, May 24, 2012.

  1. Dolphin

    Dolphin Senior Member

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  2. Dolphin

    Dolphin Senior Member

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    Letter sent to doctors involved in care of the patients in the treatment group:

    http://funktionellelidelser.dk/file...Consultation_letter__additional_material_.pdf

    (It's in English)

    via: http://funktionellelidelser.dk/en/for-specialists-researchers/doctors/stress-manual/ RE: Patient NN


    It is probably a little clearer at the link. However, many might not follow it, so here it is. :(

     
  3. Dolphin

    Dolphin Senior Member

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    No, I'm afraid you've misinterpreted it. The scores you quoted are for the SF-36 Physical Composite Score (PCS). This is one of two summary scores for the SF-36 - the other is the Mental Health Composite Scores (MCS)

    To calculate each of these is complicated: it involves using weightings from the eight individual subscales, with some of the weightings being negative! e.g. see Table 6 in http://www.chime.ucla.edu/Maglinte-...r telephone administration of the SF-36v2.pdf
     
  4. Dolphin

    Dolphin Senior Member

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    A few observations:
    You have to wonder how suitable 3.5 hour sessions are for many with ME/CFS.
    It doesn't say how CFS is defined that I can see (incl. there is no CFS criteria paper in the references).

    --

    Why they say they changed the outcome measures:
    A negative correlation means as the scores for one go up, the scores for the other go down.

    --

    (they thought more from the comparison group would drop out)

    However:
    --
    --
    I question their use of "evidence-based understanding", whatever about claiming the outcomes from CBT are evidence based (which isn't necessarily the same thing, I think).
    --
    In Limitations section:


    I'm not sure about the second sentence: I'm not sure the assessment would have helped much.

    --
    They are fishing for money for very big trials:
     
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  5. Dolphin

    Dolphin Senior Member

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    This is possibly important - it's buried in the limitations:
    I can't see any non-significant results mentioned in the main results section so I'm not sure what is being said here.
     
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  6. Dolphin

    Dolphin Senior Member

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    Yes, agree. I was about to send an e-letter to the BJPsychiatry to make this point.
    However, near the end, they say:
    so I think I might hold off till that data comes out. I don't believe it has been published yet?
     
  7. peggy-sue

    peggy-sue

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    Scotland
    While correlation has no bearing on causation, why on earth do they "assume" that mental and physical should be seperated and independant of each other?

    That is surely a dualist position. One the Psychs say they do not take!
     
  8. Esther12

    Esther12 Senior Member

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    Thanks for posting your thoughts D.

    Sorry if I've missed something, but this reminded me of the research which found that housebound CFS patients scored better for the measures of mental health they used than those patients who were doing more (I just looked, and couldn't find a copy of this, but I'm sure it got briefly discussed here - maybe I'm misrepresenting it).

    I went shopping a few days ago, and it was okay-ish (I got a couple of bargains!). I had easy food available so didn't need to worry about eating, and it was nice to be out in town. It did leave me feeling more tired, and that made me feel worse than I normally do. It reminded me a lot of when I was devoting myself to various activity management, exercise things: I was doing more, expecting to recover and feeling sicker.

    This may not be at all relevant, but I thought I'd share my anecdote.
     
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