Discussion in 'General ME/CFS News' started by Dolphin, Sep 25, 2016.
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Unfortunately, even with current questions about PACE, we can't show harms. In fact, the data available from PACE couldn't show much of anything concerning safety, except that nobody died, the authors firmly believed it was safe, and rejected the idea any adverse responses were even related to the trial.
As originally proposed, the trial did have the ability to show harms via a decrease in total activity. This is one of those pesky little details that was dropped without changing the language of claims about safety.
There was also a substantial revision of criteria for adverse responses in midstream. You could then be bedbound for a week after exercise without this being counted. (Anyone with direct experience, chime in here to correct me.)
Didn't the ME Association patient survey show harms?
It was a questionnaire survey with a bigger sample (n = 1428) than PACE and no dodgy manipulation of hidden data, so it should be seen as at least as reliable as PACE in the absence of more reliable research. I'm not suggesting anyone does any more reliable research, hopefully the time when GET is even discussed with regard to ME will soon be over and we can get down to far more promising lines of research.
Anecdotal evidence is never enough to make therapy trials "unnecessary". It may warrant additional caution or parallel investigations, but we still need a scientific study. (That is not to say that such as study cannot be unethical or biased for other reasons, of course!)
Replace "building back their strength" with LP and this passage sounds like something Henrik Vogt would say. And that is a reductio!
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