If anyone could correct me if Im wrong but superficially it seems like:
The 6MWT whilst showing statistically significant improvement - the real world improvement for improving the illness is practically negligible.
I think that is a good characterisation. We think that the overall improvements for GET vs SMC were not clinically useful, and had an effect size in the 'small' range which is generally
not considered to be clinically useful. The new paper says that changes in the 6MWT for GET were 'significant', but that seems to mean just that it was a statistically significant change. For CBT vs SMC there was no improvement in the 6MWT.
The rest of the evidence for GET and CBT is take from simplistic subjective assessments - and again - is very slight.
Their main primary outcome measures were both self-report outcomes. The SF-36 physical function scale is a widely used self-report scale. These aren't necessarily meaningless outcomes, but they have to be interpreted in context. The primary outcomes had a moderate effect size, which is considered useful, but disappointing. But, again, this outcome has to be considered in context. Considering that the trial was open-label, and without a placebo control, it's possible that all of the improvements could be explained by a placebo effect (i.e. that you would expect in a homeopathy study), or explained by biases inherent in the study methodology.
Is there a log anywhere for the claims and press released around the PACE announcements? I am interested in making a comparison chart with what they said, what the press printed - and what the real results were...
This is a bit complex, because they have said lots of things in relation to PACE. I'm not sure what you are looking for. I don't know if there is a brief summary of the PACE Trial outcomes anywhere.
I do have a list of newspaper reports relating to the initial 2011 PACE Trial report:
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The Times (paywall)
ME sufferers ‘better pushing their limits’
18 February 2011
http://www.thetimes.co.uk/tto/health/news/article2917876.ece
"Talking therapy and exercise both proved more effective than treatments which “pace” the patient’s activity to their energy levels, a study in The Lancet concludes, with twice as many patients making a full recovery."
"About 30 per cent of patients given cognitive behavioural therapy (CBT) or graded exercise made a full recovery to normal levels of activity, the study found..."
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Daily Mail
Got ME? Fatigued patients who go out and exercise have best hope of recovery, finds study
18 February 2011
http://www.dailymail.co.uk/health/a...-exercise-best-hope-recovery-finds-study.html
"The results showed that CBT and GET benefited up to 60 per cent of patients, and around 30 per cent of patients in each of these treatment groups said their energy levels and ability to function and returned to near normal levels."
The Daily Mail reported that ME patients should “push themselves to their limits” for the “best hope of recovery”.
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The Guardian
Study finds therapy and exercise best for ME
18 February 2011
http://www.guardian.co.uk/society/2011/feb/18/study-exercise-therapy-me-treatment
"The biggest-ever study of treatments for ME, also known as chronic fatigue syndrome, has found that more people recover if they are helped to try to do more than they think they can – rather than adapting to a life of limited activity."
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The Independent
Got ME? Just get out and exercise, say scientists
18 February 2011
http://www.independent.co.uk/life-s...-out-and-exercise-say-scientists-2218377.html
"Overall, 60 per cent of patients who received CBT or GET made progress and 30 per cent recovered sufficiently to resume normal lives. Among those who received APT, half as many (15 per cent) resumed normal lives. Fewer than one in ten patients left untreated recover, the researchers said."
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