PACE trial TSC and TMG minutes released

Lucibee said:
here are all the mentions of The Lancet in the TMG/TSC minutes:
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Thanks for that. The more of these I read, the more I think that I need to go through them methodically myself.

The need to carefully select the person who writes the editorial on the main paper was also
discussed.
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Yeah.... they were careful.

Both graded exercise therapy and cognitive behaviour therapy assume that recovery from chronic fatigue syndrome is possible and convey this hope more or less explicitly to patients. Adaptive pacing therapy emphasises that chronic fatigue syndrome is a chronic condition, to which the patient has to adapt. Although PACE was not intended to compare cognitive behaviour therapy and graded exercise therapy with each other, there was actually no difference between the two. Both were more effective than adaptive pacing.

Graded exercise therapy and cognitive behaviour therapy might assume that recovery from chronic fatigue syndrome is possible, but have patients recovered after treatment? The answer depends on one's definition of recovery.3 PACE used a strict criterion for recovery: a score on both fatigue and physical function within the range of the mean plus (or minus) one standard deviation of a healthy person's score. In accordance with this criterion, the recovery rate of cognitive behaviour therapy and graded exercise therapy was about 30%—although not very high, the rate is significantly higher than that with both other interventions.
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http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60172-4/fulltext
 
Lucibee said:
@Tom Kindlon made comments on the Protocol in BMC Neurology that will also be very useful.
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I've put Tom's comments on the PACE trial protocol all together into a PDF (with ref links) for ease of access, with @Tom Kindlon 's permission. Hope this is useful.

Let me know if you spot any glaring errors, and I shall fix forthwith.

[ @Woolie - Is this suitable to be added as a resource in the Science Library, maybe here https://www.s4me.info/threads/publications-from-the-pace-trial.60/ ?]
 

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Lucibee said:
Just noticed this in TMG minutes #4, re withholding/excluding treatments specific to CFS:

View attachment 3352
Thoughts?
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It looks like a series of disconnected statements with a couple of grammatical errors to me. Presumably they thought that standard medical care should not include treatments that had been claimed to have an effect on CFS, even if without formal evidence. Which seems to imply that standard medical care really means b***** all.

I would love to know what trial equipoise is. Never heard of it.
 
Lucibee said:
Thoughts?
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From the ABC interview:

"Norman Swan: What were the doctors doing for them?

"Michael Sharpe: The doctors also had guidance on what to do and they do some very important things. The first thing, obviously, is to be clear with the patient what's wrong with them; then to give them some general guidance on not overdoing things but not resting too much; and if the patient wanted to assume a self-help approach, providing materials and support in doing that. The doctors would also prescribe medication for conditions such as pain, sleep problems and depression."

"Not overdoing things but not resting too much". This sounds like pacing advice.

Would be interesting to know who "equipoise" usage started with.
 
Jonathan Edwards said:
It looks like a series of disconnected statements with a couple of grammatical errors to me. Presumably they thought that standard medical care should not include treatments that had been claimed to have an effect on CFS, even if without formal evidence. Which seems to imply that standard medical care really means b***** all.

I would love to know what trial equipoise is. Never heard of it.
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I know the minutes for the first couple of meetings were drafted by Sharpe. It's possible he did them all, though it's not publically (sic) known. He uses 'equipoise' in his (false and misleading) COI statement.
 
I guess by "trial equipoise", they are trying to indicate that they are not favouring any particular treatment over another, but I'm not sure they really had any control over their own implicit biases in that way.

wrt to the prescriptions, I though it was interesting that they noted that there were "putative" treatments for "CFS" already out there. (Did they meant potential rather than putative?)
 
Lucibee said:
I guess by "trial equipoise", they are trying to indicate that they are not favouring any particular treatment over another, but I'm not sure they really had any control over their own implicit biases in that way.
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It seems that there is a technical definition of 'clinical equipoise' in relation to trials which boils down to the idea that you should only test two options in a trial if the expert community is genuinely undecided about which is best. I am not sure what this has to do with the minutes usage because I am not clear what they are saying.
 
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