The Call for Opposition: Challenging the P2P and IOM Processes
In our second article on how to react to the publication of the draft P2P report, Gabby Klein provides her view of why she and a large group of advocates and patients are continuing their protest of the government’s ongoing control and manipulation of our disease via their processes...
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Research studies re CFS patients 'Typical Day" with out regard to variation.

Discussion in 'Latest ME/CFS Research' started by 00smita, Feb 28, 2011.

  1. 00smita

    00smita [banned as spam]

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    One way to evaluate any study of fatigue is to ask yourself how they looked at activity levels. Did they take variation into account. If they didnt, time to put on your skeptic hat.....This is an example of how not to do it....[​IMG] Originally Posted by glenp [​IMG]
    4. The following items are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much?
    (check one on each line) ACTIVITIES

    Yes, Limited A Lot

    Yes, Limited A Little

    No, Not Limited At All

    (many activities then listed)

    TYPICAL DAY ????? Any study of CFS that asks patients questions like this ignores the periodicity of the disease will produce confusing results....This can't be stressed enough.....You can be good one day, and bedridden the next, variations can exist between days, weeks, months or even years. This has been shown in this forum over and over again......... Any analysis based on questions that ignore variation of fatigue / exhaustion levels and then attempts to to correlate these levels other phenomenon will be worthless....or worse.... This is Survey 101,

    The waxing and waning of the disease, has to be taken to account in any research that looks at activity levels. Whoever is writing these questions doesnt seems to have talked to many patients with CFS and or is missing a basic aspect of this syndrome. It is something that should be delt with in every study that purports to study CFS.
    AIDS Day SMS
    .
     
  2. Enid

    Enid Senior Member

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    I quite agree OOsmita - a "snapshot" in time is meaningless in any study of ME.
     
  3. alex3619

    alex3619 Senior Member

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    Hi, at the bottom of any survey like this you should write a comment: all questions answered by magic eightball.

    Variability is a big part of this illness, but after decades the variability has decreased for me. Bye, Alex
     
  4. WillowJ

    WillowJ Senior Member

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    WA, USA
    Brilliant.
     
  5. dean

    dean

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    This is still ignored and may be one of the keys to understanding the pathophysiology. Any study or survey whose data doesnt take this into account might so too flawed to be meaningful.
     

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