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Online BPS Psych survey of CFS patients

Discussion in 'Active Clinical Studies' started by Valentijn, Feb 19, 2013.

  1. Valentijn

    Valentijn Activity Level: 3

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    They're also getting asthma, cancer, and healthy peoples, but one of the researchers (Maryanne Martin) never looks into asthma or cancer except to compare them to "medically unexplained symptoms" like ME/CFS, IBS, etc, to show how alarmist we are, etc.

    Some very bad questionnaires are in this survey. For the psych ones, which clearly haven't been evaluated for appropriateness with a disease like ME/CFS, it might be more appropriate to give the answers that would apply if physical or cognitive disability wasn't a factor. For example, the "Hospital Anxiety and Depression Scale" finds it indicative of depression if you agree with "I feel as if I have slowed down." Hence a more accurate response is likely to be produced if you mentally edit questions like these so that you get "I feel as if I have slowed down, but not due to my physical or cognitive limitations."

    There's also some catastrophizing surveys, asking what you think your odds of getting sick, injured, or victimized are compared to other people. Psychs always ignore studies showing an increased incidence of cancer, etc, so any differences reported there will be attributed to catastrophizing. There's also a memory recall test, where psychosomatic symptom-focusers are probably expected to expend more time thinking about pain and fatigue memories than happy happy joy joy memories.

    There are also questions about how strongly you believe exercise is harmful or causes symptoms. Again, it might help to insert something like "if I/they didn't have PEM" into the question. The questions about disability levels are pretty safe though.

    So basically it's a huge stinky mess. Proceed at your own risk.

    www.surveymonkey.com/s/H3ZGSMS
     
    golden and snowathlete like this.
  2. Enid

    Enid Senior Member

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    Think I'll give this one a miss Valentjin - "medically unexplained symptoms" seems to me to be precisely that - lack of biomedical research and therefore understanding as yet. Not really an area for psychos is it. Any Immunologists, Virologists, Neurologists, Endocrinologists amongst this lot.
     
    rosie26, Mjmouser and Valentijn like this.

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