Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Dutch study: Need to change illness perception and beliefs

Discussion in 'Latest ME/CFS Research' started by Camilla, Apr 5, 2012.

  1. Dolphin

    Dolphin Senior Member

    Regarding this:
    Not everyone uses this questionnaire in this way. I recall a study which used it to measure physical symptoms (rather than a measure of awareness of symptoms):
    Also, Long Term Improvements in Patients with Chronic Fatigue Syndrome Treated with Ampligen", used 18 questions from the Symptom Checklist 90 (SCL-90) including some from this subscale to measure CFS symptoms.

    What Figure 2 shows is that the therapy didn't improve the scores.

    They describe that as "not changing focus on symptoms" but others might interpret that as not improving those symptoms.
    oceanblue, biophile and Valentijn like this.
  2. Sea

    Sea Senior Member

    NSW Australia
    "In the previous week, how much were you BOTHERED by...?"

    I refuse to answer questionnaires that are worded in this way. It's like the question "when did you stop beating your wife?" Impossible to answer without giving the psychs what they want to hear.
    Sean and Valentijn like this.
  3. wdb

    wdb Senior Member

    Yes good point, how bothered you are may change over time regardless of how well you are. If I lost a leg I may become less bothered over time but that doesn't mean it has been growing back. The Chalder fatigue scale is similar in asking about whether symptoms are more or less than than usual.
  4. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Perhaps these questions could be answered by "not bothered at all"? I mean in the last week I have been more exhausted and brain fogged, but I am not bothered by it, I have accepted it. Alternatively just write in N/A or leave it blank?

    The huge ambiguities in these questionairres make them highly subjective and subject to biased interpretation, as if asking about thoughts isn't subjective enough.
  5. Dolphin

    Dolphin Senior Member

    Thanks for this. I just watched it (well, I broke it into smaller bits).

    Just an idea that occurred to me, but it may be silly - I don't know enough about Structural Equation Modelling to know whether it is plausible or not)
    The bit at around 30 minutes, where one can test whether particular questions might be answered differently due to gender or at different time points, made me think of the PACE Trial, and other similar trials. One might have a concept of severity and the scores at baseline could be a function of various variables. One could perhaps then test the hypothesis that such functions don't work well after CBT or GET. For example, the fact that there was no difference on the six minute walking test between CBT+SMC vs SMC alone, but CBT recorded a big increase in a lot of the questionnaire scores. If SMC at time two answered the questions in a similar way to baseline in terms of overall severity (they might not do), but CBT+SMC didn't, this could be interesting.
    Snow Leopard likes this.

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