Discussion in 'Latest ME/CFS Research' started by Dolphin, Sep 10, 2016.
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Under the heading of "What will happen to me if I take part?"
Does this mean the intervention was 6 weeks, with a follow up at 8 weeks (2 weeks after the end of the intervention)? And results were maintained for those 2 weeks?
Not sure I am enthusiastic about being able to maintain for 2 weeks. This disease has so many ups and downs at unforeseen intervals that I am not sure maintaining for 2 weeks means a lot.
The 3 month followup was not required (I haven't yet seen what the results were at that mark).
I've skimmed through this and am at least reassured that the researcher is aware of the criticisms of CBT and GET, and is trying a different approach that seems to be more about helping people live with CFS and improve quality of life.
Not sure about the lack of definition of diagnostic criteria used, self selected sample, lack of control group... And one person seemed to be nearly 100 on the physical SF questionnaire all 3 times, making me wonder if they had ME.
At a glance there seems to be very little correlation between Fitbit scores and questionnaire scores, making me wonder what use most questionnaires are in measuring anything objective, bringing me full circle to the PACE trial data, and how useless it is.
And wild week by week fluctuations in Chalder fatigue scores and SF physical functioning scores demonstrates both the fluctuating nature of CFS and ME, and the unreliability of using a single measure of these as before and after measures in other studies such as PACE.
In fact I'd say the greatest, though unintended, value of this study is this evidence of fluctuation in these 2measures, adding to the evidence of the unreliability if the PACE trial!
The author does acknowledge that this is a pilot study to test feasibility of such interventions. Which makes any conclusions from this tiny sample completely unreliable.
A paper has now been published on this:
Separate thread on the paper:
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