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Daily physical activity of patients with CFS: a systematic review (Evering et al, 10)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Oct 18, 2010.

  1. Dolphin

    Dolphin Senior Member

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    This was being discussed in another thread. I thought I'd give it it's own thread. I've made it easier to read by giving each sentence a paragraph.

    Valentijn and Esther12 like this.
  2. oceanblue

    oceanblue Senior Member

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    This adds more weight to the view of studies (therapy trials?) using pretty high-functioning CFS patients. I wonder what the daily physical activity levels for typical ME patients in the community, including the substantial percentage that are severely affected?
    peggy-sue, Valentijn and Esther12 like this.
  3. Sasha

    Sasha Fine, thank you

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    I think that without knowing what the reviewers used as inclusion criteria - i.e. what definition(s) of CFS made a study eligible to be in their review - it's very hard to comment on this study. If even a few of the studies were showing no difference in activity between cases and controls then I agree that it can't have been ME they were looking at, or at least not a representative sample.

    Another waste of research funds. Ironically, they could have done the same study casting a wide net using all CFS diagnostic criteria (Canadian through Reeves) and then done a subset analysis (Canadian vs Reeves etc.). I'd be amazed if Canadian criteria folk weren't hugely more inactive than controls while Reeves criteria folk would show little or no difference. That study, if done, could have demonstrated the pointlessness of the Reeves criteria.
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  4. Sean

    Sean Senior Member

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    I dream of being able to do 68% of what I used to before getting sick. Indeed, I would be very happy with 50%.
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  5. oceanblue

    oceanblue Senior Member

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    Unfortunately as there were only 7 studies with daily physical activity levels, there probably weren't enough studies to do a subset analysis - though the results would have been very interesting.
  6. Sasha

    Sasha Fine, thank you

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    Possibly, but it would be a question of statistical power given the effect size of the difference - depending on how many studies of each type there were and how big the case/control differences within each study of each type. If the differences are big (i.e. people with Canadian criteria ME hugely incapacitated vs controls but Reeves cases little or no difference) there could still be a statistically significant effect even with few studies and with a large effect size for the Canadian/Reeves difference. It's the sort of thing you have to just try and see. Also depends on the size of the individual studies themselves (the bigger the study, the tighter the confidence interval for each study and the easier to detect differences between studies).

    Generally speaking, I think there is potential to use systematic review/meta-analysis comparing other kinds of CFS study doing a Canadian vs Reeves analysis and looking for differences in the outcomes (I'm using C vs R as shorthand for the range of CFS diagnostic criteria). For example, if there were some GET studies done separately on PWCanadian and PCReeves, I'd expect to see beneficial effects of GET in the PCReeves studies perhaps, but harmful effects in the PWCanadian studies.

    Really appals me that researchers churn out studies with broad CFS criteria without flagging which patients would also fit e.g. the Canadian criteria. It would be so easy to do within-study subset analysis. V. cheap and easy add-on to any study.
    peggy-sue likes this.
  7. Dolphin

    Dolphin Senior Member

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    I don't know all the literature but don't think there have been any studies use actometers/pedometers done using the Reeves or Canadian criteria. It would be interesting of course. My guess is most of the studies using actometers/pedometers were done by the Nijmegen group in the Netherlands which might be a biased group of patients (they're big into CBT there - not CBT for a chronic illness but CBT to cure - see manual at: http://www.forums.aboutmecfs.org/sh...-(from-2003)-(Bleijenberg-Prins-amp-Bazelmans)).
    Valentijn likes this.
  8. Esther12

    Esther12 Senior Member

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  9. Esther12

    Esther12 Senior Member

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    I was just looking into this paper, and then noticed it had recently been cited in:

    Does Cognitive Behavioral Therapy or Graded Exercise Therapy Reduce Disability in Chronic Fatigue Syndrome Patients? Objective Measures Are Necessary
    Andrew James Kewley

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  10. biophile

    biophile Places I'd rather be.

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    I have not yet looked at the individual papers cited, nor am I sure whether there is contradictory evidence which was not included in this systematic review or if such evidence exists but is later than 2009/2010. IIRC, some discrepancy or weak correlation is common in other diseases and also in healthy people. CBT/GET could add distortions too, as evidenced in the Dutch trials (patients showing lower than normal activity before therapy, but then reporting less symptoms and less disability after therapy without increases in activity). Not to mention the PACE Trial.

    When faced with this problem, CBT/GET researchers such as White et al of PACE, have decided to dismiss objective measures as irrelevant to improvement and recovery, saying that patients are somehow the best judges, despite the rationale of therapy casting doubt on patients perceptions' about their illness. This decision coincides with subjective measures giving better results and objective measures generally showing no significant improvements.

    Talk of discrepancies and weak correlations should not distract away from this important finding:
    "The meta-analysis included seven studies and showed a daily physical activity level in patients with chronic fatigue syndrome of only 68% of the physical activity level observed in control subjects."

    I think in at least some of those seven studies, the controls were sedentary too.
  11. Sea

    Sea Senior Member

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    That's because their definition of sick is that you believe you're sick and their definition of recovered is that you believe you are much better. You don't need objective tests for that, in fact objective measures only get in the way of their "treatment"

    You might be tempted to believe you're still sick if they do objective testing that shows you can't do more than you did before their intervention.
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  12. Dolphin

    Dolphin Senior Member

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    This is in research so there's a good chance the patients never got their results. If they were genuinely concerned about this, they could not give the patients the results but still report results in research papers.
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Yes, but we must remember that we are less active due to a fear of activity. :lol:
  14. A.B.

    A.B. Senior Member

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    Only 68% of control levels? I expected something like 30%.
  15. Esther12

    Esther12 Senior Member

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    Depending on how it's measured, even quite sedentary 'activity' can count as being active.
  16. Esther12

    Esther12 Senior Member

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    This was cited above. Not read the full paper, but thought the abstract alone could be of interest.

    http://www.ncbi.nlm.nih.gov/pubmed/9447571
    Valentijn likes this.

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