Discussion in 'PsychoSocial ME/CFS Research' started by Andy, Aug 25, 2018.
Open access at https://www.dovepress.com/chronic-f...y-of-life-peer-reviewed-fulltext-article-PROM
hmmm. Whilst quality of life does need better definition, And listening to patients is important, I’m not sure this paper does very much to change the predominant obsession with mood and unhelpful beliefs as oppose to cognitive dysfunction and exertion intolerance being the main impacts to quality of life.
Mood and anxiety are fairly insignificant so why the overemphasis? Not a very balanced literature survey either since no mention of the fact that the current therapies are not successful.
I suppose there is a mild challenge to inadequacies to the chalder questionnaire nonsense and it does mention the importance of memory problems , but it is way off the mark in my opinion.
I know this is a review of data gathered through questionnaires, but I don't see how they don't see that the flippin' questionnaires are part of the problem, in my opinion.
The questionnaires do not necessarily capture the information that they are designed to elicit and, even if they do happen to design it right for a specific instance, it isn't necessarily appropriate to use it elsewhere.
Questionnaires are so easily biased, questions can often be misinterpreted by the patient because they are ambiguous, patients can be subtly coached etc., etc.
On the plus side she points out the some of the problems with CFQ and SF-36 to assess progress in CFS. On the down side , she suggests another questionnaire as the solution. Has she never heard of objective measures? And as others have said, why the obsession with mood.
Not such a hard question. The clue is in what they are trying to measure things for:
Clearly the rehabilitation isn't likely to fix your cognitive dysfunction or exertion intolerance. But it can change how happy you are about having those problems, at least as reported in a questionnaire.
I have now read this in full. I will post some comments but I should probably say that I didn't find this paper particularly exciting and I'm not even sure that any comments I have are that interesting. But I've read it, so thought I would post my comments and some extracts somewhere.
I have read previously that satisfaction surveys can often give high scores so perhaps this is of use.
She does highlight that the illness can have dramatic effects.
This is a model she presents. I'm not convinced that the illness begins with such bad circadian rhythm dysregulation that it can be listed as a aetiological factor. Most people when they become ill will be working full-time or studying full-time outside the home and so will likely need to get up at the same time every day. So I'm not convinced a large percentage have the option of having a circadian rhythm dysfunction.
Also not convinced that severe muscle deconditioning occurs at the start as most people aren’t diagnosed for a long time and won't have the option to be very inactive. They will still likely be expected to work or study and/or deal with any childcare responsibilities.
Where she is coming from
Not much focus on this in a lot of the clinical trials or also the audits of CFS services.
I took it to mean that as qualitative analysis is wiffley waffley, it is very unreliable as input for determining health care services.
Showing what she believes.
I don't recall this paper being cited or referred to much so I have started a thread on it.
WHOQOL Brief was used in this study. Again this rarely gets cited.
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