Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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CFS/ME – a Randomized Controlled Trial on effect of treatment

Discussion in 'Latest ME/CFS Research' started by deleder2k, Dec 20, 2016.

  1. deleder2k

    deleder2k Senior Member

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    Study on ME/CFS by the Hospital of Vestfold in Norway.

    The study was approved by the Ethics commitee on the 27th of April 2016. End date is set to late 2019.

    English study protocol from page 27
     
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  2. BurnA

    BurnA Senior Member

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    Huh ?
     
  3. RogerBlack

    RogerBlack Senior Member

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    "blood pressure and temperature" - what?
    However, if they're actually delivering something already, measuring its efficacy can only be a good thing. (if done properly).
     
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  4. trishrhymes

    trishrhymes Senior Member

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    Well, that's a new one on me.

    ME is apparently characterised by fatigue (not PEM) and is the result of 'chaos' in cardiovascular control.

    Does this mean what they are calling ME is actually the same as orthostatic intolerance, which as I understand it one common symptom of ME and included in some definitions as a sign of autonomic problems. And specifically, high blood pressure??

    At least they seem to be saying that the hypothesis they are testing is that none of the 3 treatment regimes will lead to improvement in functioning. (I think). Makes a change from the likes of Crawley who think it's OK to tell patients in advance that there will be a 60% success rate.

    I wonder why they're not using actometers throughout the trial to see whether the treatments actually lead to any increase or decrease in activity.

    Looks like only mildly effected will be able to participate, if they are expected to turn up weekly and sit through 2 hour sessions, and do a 6 minute walk on a treadmill.

    And I wish people would stop using that ridiculous Chalder Fatigue Scale.

    On the positive side, since these treatments are already happening anyway, it's good they are trying to find out if they actually achieve anything.

    Hopefully well before this finishes the other Norwegians will have some useful results on Rituximab etc.
     
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  5. A.B.

    A.B. Senior Member

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    Doesn't look like this will generate any useful data, other than documenting PEM in a portion of patients.

    It seems curiously free of psychobabble, which would be sign of slow progress (but maybe it's just well hidden?)
     
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  6. PennyIA

    PennyIA Senior Member

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    What would be nice is if they captured the negative impacts of the study. That would be awesome to report. (Sucky for the people in the study) but it would be great if negative impacts were actually documented (instead of discarded).

    Edited to remove CBT/GET as they aren't actually studying that... but including that I still want them to document patients that get worse when they exceed their energy envelop as the requirements for participation are pretty costly in time-energy situation.
     
    Last edited: Dec 20, 2016
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  7. trishrhymes

    trishrhymes Senior Member

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    But it doesn't look like those treatments are being used. They seem to be based on a mix of education in their 'bodily chaos' theory and stuff about orthostatic intolerance and blood pressure etc, and activity management to avoid PEM, if I understand it correctly.
     
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  8. PennyIA

    PennyIA Senior Member

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    You're right... I guess my cynicism read the Activity Management section - saw the 2 hours a week and thought - that'd be enough to trigger PEM and translated it into worst possible correlation.

    So, more accurately then... I'll update my message to clarify.
     
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