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Symptom fluctuations and daily physical activity in CFS (Meeus et al, 2011)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Nov 9, 2011.

  1. mtnbibliophile

    mtnbibliophile

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    My concern about this study (and others) is that the control group is composed of sedentary people. I don't understand why.
    For one thing, those people may be sedentary because of unknown, undiagnosed illnesses.
    For another, I don't know about you all, but I was far from sedentary when I contracted this illness. I think the control group should more appropriately match the average pre-morbid activity level of the CFS patients being studied. Compare me to someone who's sedentary because of an unknown illness or genetic disposition or whatever, and our symptom fluctuations may not differ much. Compare me to someone who works in a stressful job 60 hours a week, as I did, and I bet there's a lot more difference.
    Can anyone explain why sedentary controls are used?
    thanks
     
    taniaaust1 and ggingues like this.
  2. WillowJ

    WillowJ Senior Member

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    welcome to the forum, mtnbibliophile :)

    the strategy behind using sedentary controls is to sort out what is from this specific illness (or illness spectrum) as opposed to what might be from being generally less active than other people.

    in experimental design there is something which is called a 'confounding effect'. What you described as the difference between really any sick or even any inactive person and someone who works 60 hours a week is a real difference, but it isn't necessarily due to the exact thing being studied. In order to sort out what specifically is due to the exact thing being studied, controls are sought which are as similar as possible to the people being studied.

    Thus it's useful to use in some studies presumed healthy sedentary people, and in others you'll see people with MS, rheumatoid arthritis, major depressive disorder, etc. as controls (as well as healthy controls). It's most often a mark of a poorly-designed or poorly-interpreted study to compare sick people to only healthy people (there are some like this), because then one can't tell whether something is due to illness in general, due to some indirect effect of being ill or some shared risk factor to being ill, or whether it indeed relates directly to the specific thing which is being studied.
     
  3. mtnbibliophile

    mtnbibliophile

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    Thank you for your prompt response, Willow. I'm glad to have discovered this forum, where the levels of both civility and knowledge far exceed what I have seen elsewhere. I understand your reasoning, Willow, but I still think it was inappropriate to use sedentary controls in this case. I don't care that my symptom fluctuations are similar to those of similarly sedentary people. My concern is, when I try to explain to a healthy person that "yes, I look fine now, but my symptoms vary tremendously and I didn't feel this well yesterday", and the healthy person dismisses my illness by saying, "Oh, everybody has good days and bad days" or something similar, I want to be able to cite peer-reviewed scientific research that shows that the fluctuation in symptom severity in CFS patients during a day or from one day to the next far exceeds the amplitude of fluctuation in feelings of wellness in normally healthy people. Does such a study exist amd if so, can someone point me to it? We all have plenty of anecdotal evidence, but hard data would be much more convincing to the skeptical.
     
  4. WillowJ

    WillowJ Senior Member

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    you're welcome.

    Maybe what you need are these studies:

    Anderson JS, Ferrans CE. "The quality of life of persons with chronic
    fatigue syndrome.
    " J Nerv Ment Dis. 1997 Jun;185(6):359-67.


    Komaroff AL, Fagioli LR, Doolittle TH, Gandek B, Gleit MA, et al. "Health
    status in patients with chronic fatigue syndrome and in general population
    and disease comparison groups.
    " Am J Med. 1996 Sep;101(3):281-90.


    Buchwald D, Pearlman T, Umali J, Schmaling K, Katon W. "Functional status in
    patients with chronic fatigue syndrome, other fatiguing illnesses, and
    healthy individuals.
    " Am J Med. 1996 Oct;101(4):364-70.

    And this essay series with references:

    http://cfids.org/cfidslink/2010/pem-series.asp

    I hope that helps.
     
  5. mtnbibliophile

    mtnbibliophile

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    Thank you for the effort, but no. I'm very specifically looking for something that addresses the swings between our best times and our worst times, and how those swings are far wider than the usual ups and downs that a healthy person undergoes. Dr. Bell, in his "Faces of CFS" book, had a wonderful example of a patient who lay in bed 22 hours a day, but played basketball the other two hours. Unfortunately, that's anecdotal evidence, not as convincing as research studies, especially if you're trying to explain to your disability insurer that their 15 minutes of videotaped activity does not mean that they have evidence that I'm no longer severely disabled.
     
  6. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I think ‘subscribe to post’ was the terminology of the old board and that the current equivalent is ‘watch thread’. You do that clicking the button at the upper right of the thread. You can choose whether or not to get e-mails. You can see your watched threads by clicking on ‘Watched Threads’ on the bar across the top of the thread.
     
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  7. barbc56

    barbc56 Senior Member

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    Thanks!!!!
     
  8. WillowJ

    WillowJ Senior Member

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  9. Enid

    Enid Senior Member

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    Peculiar research this and off real medical biological/pathology findings now apparent. Who the bh knows quite what one is capable of from day to day until the pathophysiolgy (well on the way) understood and indeed treated. How much longer do we have to go into useless studies of eg fatigue especially now the BIOLOGICAL pathology is now being revealed.

    Oh and symptom fluctations - how about passings out one minute or upright (just) remembering names. Any whizz solution here.
     
  10. mtnbibliophile

    mtnbibliophile

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    Willow, Dolphin, a belated thank you for your help. I got sidetracked onto different CFS issues - for some of which I went right back to this thread for information - but never remembered to thank you. Now that I'm two days away from filing my appeal of my disability insurer's denial of benefits, I'm tying up loose ends, and you two were among them. It is a joy to be on Phoenix Rising and see all the knowledge available here.
     
    WillowJ, Valentijn and Dolphin like this.

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