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Ambulatory monitoring of physical activity & Symptoms in FM and CFS (2005)

Discussion in 'Latest ME/CFS Research' started by WillowJ, Sep 15, 2011.

  1. WillowJ

    WillowJ Senior Member

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    Kop WJ, Lyden A, Berlin AA, Ambrose K, Olsen C, Gracely RH, Williams DA, Clauw DJ. "Ambulatory monitoring of physical activity and symptoms in fibromyalgia and chronic fatigue syndrome." Arthritis Rheum. 2005 Jan;52(1):296-303. PMID: 15641057

  2. WillowJ

    WillowJ Senior Member

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    The interesting thing about the above results is that the patients do not have high peak activity as compared to sedentary controls, yet their average activity is similar. This does not support the idea that such patients are engaging in a boom-bust or push-crash cycle.

    Good points!

    It's difficult to say for sure because they change the terminology, but they do not appear to have assessed the temporal relationship between activity and symptoms past 30 minutes. This is not enough to capture PEM/PER/PENE.

    Their data does not support an unhealthy fear of activity. I think this is an unreasonable conclusion since they did find an association between reduced activity and concurrent symptoms, and increased activity and reduction in symptoms (thus, patients are indeed increasing activity as able).

    These data do not support a "vicious cycle" as claimed; for that there would have to not be an increase when feeling better, relative to activity when feeling worse, or at least relative to the previous good spell. They do not demonstrate any such pattern.

    Furthermore they seem to have ignored a great deal of published literature establishing a worsening of condition in CFS with exercise or exertion of any kind.
    Dolphin likes this.
  3. ahimsa

    ahimsa Senior Member

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    Any study which measured "activity" as movement only, and did not consider orthostatic stress (standing, sitting upright), would not accurately assess a patient that had any type of Orthostatic Intolerance (NMH or POTS).

    For example, is standing still or sitting still counted as an activity or counted as being sedentary? I could walk for 5 minutes much more easily than I could stand still for 5 minutes. Based on the following extract from the full text of this study I believe that the walking would be counted as activity and the standing still would not:

    This sounds to me like sitting still or standing still would count as "no activity."
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  4. Dolphin

    Dolphin Senior Member

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  5. Snow Leopard

    Snow Leopard Senior Member

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    Quite frankly, I found the conclusions bizarre. The fact that patients have a more consistent activity level=boom/bust? Sounds like a non sequitur.

    Likewise, patients would have had to INCREASE their activity levels beyond their limits if we wished to test the hypothesis whether increasing activity levels leads to increased symptoms.

    Luckily there have been studies that have investigated just that:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC555551/
    http://www.ncbi.nlm.nih.gov/pubmed/21254053
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  6. WillowJ

    WillowJ Senior Member

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    bizarre, yes.

    there isn't even any internal consistency in these models. on the one hand, patients are supposed to have an unreasonable fear of activity, but on the other, they are supposedly approaching activity in an "all or nothing manner" or throwing themselves fully into activity during a "boom"... doesn't sound too fearful to me!

    of course, neither supposition is true: this paper itself (and a more recent study by Julia Newton's group, which was recently pointed out to me) disproved the boom part, and the studies SL posted disproved the irrationality of the patients' expectation of increased symptoms from activity.
  7. Dolphin

    Dolphin Senior Member

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    Yes, when one starts thinking about these models they start breaking down.

    Well, technically more the "bust" part - that people boom and then bust and end up spending too much time at a low level which causes problems:
    This (Kop et al) study, found no difference in low- and very low-intensity activities (see Table 2)

    and similarly
    found there was no increase in the amount of time people with CFS were sedentary compared to others.
  8. WillowJ

    WillowJ Senior Member

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    ok, yes. :Retro smile: I forgot about that already.

    do you see any significance in the low peaks of activity in the patient groups?
  9. Dolphin

    Dolphin Senior Member

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    Short answer: they may be trying to avoid "booming and busting"!

    And possibly: some patients' bodies often won't let them do high peaks of activity, even if they do try (for some people, perhaps all the time; for others, they might be able to have higher peaks some of them time, but are more ill at other times and can't).

    ------
    The significance of the studies I think works better on the "bust" part: they might say, because of a lack fitness/deconditioning, people would still be "booming" at a lower intensity (i.e. it wouldn't have to be high intensity to qualify as "booming").

    The stereotype often put out is that people take to their beds. Also they talk about the problems of bed rest in "healthy people"/people who don't have ME/CFS, and how it can cause the symptoms (they select to highlight) of ME/CFS. However, the studies show people don't engage in increased low/very low intensity activity.
  10. WillowJ

    WillowJ Senior Member

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    this was what I was asking; thanks.

    even though the sedentary controls also lack fitness, is the presumption that the patients (the ones who turn out for exercise studies) have less fitness? how about the 2001 Bazelmans study which found patients not less fit? or are we just avoiding overstating our side of the case?
  11. Dolphin

    Dolphin Senior Member

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    Not exactly sure what you mean in the last sentence. The Bazelmans et al (2001) study, funnily enough, tends not to be mentioned. I'm not sure many of the CBT/fear avoidance school of thought have tried to explain the finding away very much.
  12. WillowJ

    WillowJ Senior Member

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    yes, they just ignore whatever they don't like; that way they needn't evaluate their models! then they take to the media and say it's the patients who don't understand the scientific method. it would be funny, if it weren't so deadly serious.
  13. Dolphin

    Dolphin Senior Member

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    The SF-36 Physical functioning subscale is often used in ME/CFS trials (incl. the PACE Trial). Thus, I thought the following was interesting:
    (from Discussion)
  14. WillowJ

    WillowJ Senior Member

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    that's very interesting; thanks for posting it here.

    Here's a demo of the SF-36 in case anyone wants to see the questions
    http://www.sf-36.org/demos/SF-36.html

    While looking for something completely different, I also found a letter questioning the validity of the "boom and bust" (or push/crash) model - since the model is contradicted by a Belgian study which found, "Compared to healthy controls, no indication was found that the CFS patients as a group were characterised by a high number of large day-to-day fluctuations in activity."

    I know you're familiar with the letter, Dolphin, but I thought it was worth citing in this thread.
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  15. Esther12

    Esther12 Senior Member

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    Thanks for pointing this out.
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