Just to point out that the actometer data was neither a primary nor a secondary outcome measure.
There is a chance they might not have published it if it didn't suit.
They used actometers in Nijhof et al. (2012) https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-11-23 but have never...
It would be interesting to have data on these goal sheets and for an independent person to assess whether patients had reached such goals. I don't believe the Dutch CBT school ever discuss these goal sheets in terms of outcomes in published papers.
That's interesting.
According to the protocol, somebody with a low level of activity is not supposed to go to a stabilisation period even though they could be fluctuating, but just at a lower level of activity.
From the protocol paper:
From the protocol paper:
Firstly, I doubt a lot of these are truly recovered.
Also there is no sign that participants hear from patients who believe some or all of the programme made them worse.
I noticed on Twitter someone replied and Carol asked did she have permission to mention it. So best to explicitly say what you are happy to be shared. I don't think full names will be mentioned but perhaps if you don't want your first name mentioned, say that. I don't follow such formats so...
Parliamentary business for Tuesday 20 February 2018
House of Commons
11am - 11.30am Westminster Hall debate
PACE trial and its effect on people with ME - Carol Monaghan...
If I recall correctly Dr Enlander/his research team were given in the region of $1,000,000 by a patient. I very much hope some studies will be published.
These people were a lot healthier at baseline than for example the people in the PACE trial.
Average SF-36 physical functioning (0-100) score:
PACE trial: 38.05
This trial: 62.5
Average Chalder fatigue questionnaire (0-33) score:
PACE trial: 28.2
This trial: 24.1
I find it interesting to see the individual data in studies, like they have given here. Though I would have been more interested in other outcome measures than fatigue.
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