A general thread on the PACE trial!

Lucibee said:
Whatever happened to the 10-year follow-up study?
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A couple of years ago, QMUL published something that indicated White was the PI for that. It was after he had retired. So I badgered the PR guy a few times to get an answer as to how this study was going forward with White if he was retired. And if it was going forward, who was doing it, if not White. I was told then that the study was no longer being planned at that point. Not sure what if anything has happened since. It took a few back and forths to extract that information.
 
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Response to a deleted discussion of a deleted tweet.

As i recall, PACE & FINE were definitely described as 'sister' trials back in the late naughties. Sorry i dont have a ref for that but i do remember it being 'common knowledge' at the time. So someone in the FINE arm could quite easily have thought of themselves as being part of the 'PACE trials'.

NelliePledge said:
Every time I see LTFU of PACE mentioned my brain doesn’t think - follow - up :whistle:
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Indeed :D
 
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Lucibee said:
Ah yes - the feasibility study got approval 3 and a half years ago now - I very much doubt they ever bothered doing it.
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Oh, no, that's impossible, I was assured they were chased out of the field by relentless death squads hounding them day and night. That can't be right.
For this feasibility study we will use a random sample of 60 participants from two of the original five PACE trial centres
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Wow, a whole 9%, which I'm sure will be totally "random". And they consider a 75% response rate to be a success, so 7%. That's some "success" right there.
 
JemPD said:
As i recall, PACE & FINE were definitely described as 'sister' trials back in the late naughties. Sorry i dont have a ref for that but i do remember it being 'common knowledge' at the time. So someone in the FINE arm could quite easily have thought of themselves as being part of the 'PACE trials'.
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From the first PACE participants newsletter:
Fine (www.fine-trial.net) is a “sister” study to PACE currently being carried out in the north west of England. It will show [know] how effective a “pragmatic rehabilitation” programme, provided by nurses in a patient’s home, is. The programme has the major advantage of allowing people who are too unwell to attend a clinic to nonetheless receive treatment
https://web.archive.org/web/20140712065624/www.pacetrial.org/docs/participantsnewsletter1.pdf​
 
Of course...



Oh yeah, they totally "stepped back" and boldly and unbiasedly tested the thing they have been selling for decades. I'm sure that the fact that Horton shares those beliefs has nothing to do here. Nothing at all.
Richard Horton: We were delighted to get this trial, it was eagerly awaited. It was a remarkable study because the investigators stepped back and were willing to do an experiment comparing conventional treatments for chronic fatigue, cognitive behavioural therapy for example against a treatment which was very much endorsed by parts of the patient community but very sceptically received by the more scientific community and that was the adaptive pacing therapy. So they were really stepping back and comparing two philosophies, not just two treatments, two philosophies of what chronic fatigue syndrome was.

Norman Swan: In other words whether or not you can be rehabilitated to some extent and whether or not you should actually just adapt to the condition.

Richard Horton: Yeah, I mean adaptive pacing therapy essentially believes that chronic fatigue is an organic disease which is not reversible by changes in behaviour. Whereas cognitive behaviour therapy obviously believes that chronic fatigue is entirely reversible and these two philosophies are kind of facing off against one another in the patient community and what these scientists were trying to do is to say well, let’s see, which one is right.
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Richard Horton: Yeah, I mean adaptive pacing therapy essentially believes that chronic fatigue is an organic disease which is not reversible by changes in behaviour. Whereas cognitive behaviour therapy obviously believes that chronic fatigue is entirely reversible and these two philosophies are kind of facing off against one another in the patient community and what these scientists were trying to do is to say well, let’s see, which one is right.
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There is no universe in which that statement is true.
 
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