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Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Measuring the physical activity level and pattern in daily life in ME-CFS

Discussion in 'Latest ME/CFS Research' started by Dolphin, Sep 1, 2017.

  1. Dolphin

    Dolphin Senior Member

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    http://www.tandfonline.com/doi/full/10.1080/10833196.2017.1300624

     
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  2. Dolphin

    Dolphin Senior Member

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    Although the abstract does not make it clear, they found the grand total of two papers one of which was by the corresponding author.
     
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  3. Wonko

    Wonko Senior Member

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    The other side.
    So instead of asking pwME, or those responsible for their care, or the physicians treating them, they "googled" it - and this is research?

    Wouldn't a graduate student be found guilty of plagiarizing under the current rules for this sort of thing?
     
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  4. Snow Leopard

    Snow Leopard Hibernating

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    They did a systematic review and found no one has done the basic research that someone should have done 30 years ago.
     
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  5. Stretched

    Stretched Senior Member

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    U.S., Southeast
    Like, when it rains things outside get weto_O
     
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  6. Dolphin

    Dolphin Senior Member

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    There is not good evidence that I can think of that too much rest is a significant problem for people with ME/CFS

    More criticism of patients:
     
    Last edited: Sep 1, 2017
  7. Dolphin

    Dolphin Senior Member

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    Minor point: I dislike that the word "recovery" is used when it is a rare outcome.
     
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  8. Dolphin

    Dolphin Senior Member

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    I don't find this very interesting. Some people could be passive because they are more severely affected. Also there is a big range in the group who could be described as "fluctuating active".

    It is used in some Dutch CBT. The group who are said to be "fluctuating active" are allowed stabilise/reduce initially to find their baseline while those who are passive are told to simply increase from the start.

    The study found that the three questionnaires/instruments were no good at accurately assigning people to either group based on the results of the actometers

    e.g.
     
    Last edited: Sep 1, 2017
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  9. Dolphin

    Dolphin Senior Member

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    Main results from the other study:
     
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  10. Dolphin

    Dolphin Senior Member

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    Minor points:

    True, though one could always use more than one at the same time in the meantime.
     
    Last edited: Sep 1, 2017
  11. Dolphin

    Dolphin Senior Member

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    Minor points:

    True, though I imagine most patients with ME/CFS wouldn't be able to increase their activities for a sustained period.
     
    Last edited: Sep 1, 2017
  12. Dolphin

    Dolphin Senior Member

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    Minor points:

     
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  13. Snow Leopard

    Snow Leopard Hibernating

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    It still bothers me that they never bother to ask patients what we think would be most reliable. It's still all about the convenience of the researchers.
     
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  14. Artstu

    Artstu Senior Member

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    Yep they're doing far too much talking, slap a couple of devices on PWME and healthy controls for a week, one on the ankle, one on the wrist and get some flipping data.
     
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  15. RogerBlack

    RogerBlack Senior Member

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    A fair number of the researchers, given actiometer data, would relegate it to supplemental figures, and report only on how the number made the patient feel.
     
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  16. Valentijn

    Valentijn Senior Member

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    Yes, it's interesting that the excuse of "it's too hard for the patients" has morphed into "we're too damned stupid to figure out how to use them."
     
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  17. Dolphin

    Dolphin Senior Member

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