Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT

Daisymay said:
Another thing which this paper clearly shows to the outside world is how all the changes were in one direction, to ensure CBT/GET had positive results ie these changes weren't random, weren't due to someone making errors in methodology or statistics, no, this was orchestrated.
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Its indirect evidence of deliberate bias. Direct evidence occurs with the manipulation of SF36PF data in the calculation of normal, on which their claim of any recovery relies heavily.
 
Carolyn Wilshire said:
But can I just say again the protocol is the protocol is the protocol. Its fine to produce a stats plan that elaborates on the protocol, but that stats plan cannot contradict the protocol in any way. Well, because its not the protocol.
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I suppose this is roughly analagous to a taxation law, that is then explained in more detail in a guideline document. The guideline document has no remit to change the law itself.
 
Has it been looked at how many people got worse, and by how much, compared by treatment?

I have no spreadsheet skills at the moment so have only been able to see from a histogram of all participants that it looks like about 1/3 of participants had negative change in SF-36 physical functioning score and 6 minute walk distance. Would like to see it by trial arm.
 
The Journal of the Norwegian Medical Association has written an article about the re-analysis.

Neurologist and senior doctor at Haukeland university hospital, Jone Furlund Owe, comments on the re-analysis and says it has a weakness in that the authors didn't have all the data from the PACE-trial. He thinks the authors make the same mistake as the PACE-authors when concluding that it is now time to look for other effective treatments for chronic fatigue syndrome. He says the new analysis can't confirm there are no positive effects from CBT or GET, it only points to weaknesses to the PACE-study.

Jone Furlund Owe is responsible for the ME-assessment at his ward. He is known for a biopsychosocio approach to ME.

Tidsskrift for den norske legeforening: Tvil om studiefunn ved kronisk utmattelsessyndrom
google translate: Doubt about study findings in Chronic Fatigue Syndrome
 
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Kalliope said:
The Journal of the Norwegian Medical Association has written an article about the re-analysis.

Neurologist and senior doctor at Haukeland university hospital, Jone Furlund Owe, comments on the re-analysis and says it has a weakness in that the authors didn't have all the data from the PACE-trial. He thinks the authors make the same mistake as the PACE-authors when concluding that it is now time to look for other effective treatments for chronic fatigue syndrome. He says the new analysis can't confirm there are no positive effects from CBT or GET, it only points to weaknesses to the PACE-study.

Jone Furlund Owe is responsible for the ME-assessment at his ward. He is known for a biopsychosocio approach to ME.

Tidsskrift for den norske legeforening: Tvil om studiefunn ved kronisk utmattelsessyndrom
google translate: Doubt about study findings in Chronic Fatigue Syndrome
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As if you're supposed to only research one possible treatment until it's been proven there are no positive effects? Then we should have only looked at bloodletting for every disease for the last couple centuries.

Same mistake? So according to him,

Time to look for other treatments = Unblinded subjective study with outcome switching, moving the goalpost behind the starting line, publishing testimonials mid-trial, trying to hide data...

Um no, that's not even comparing apples and oranges, or apples and baboons.

The "logic" of the biopsychosocial crowd is astounding.

But thanks for pointing out that not letting others have access to all the PACE trial data creates a weakness for anyone trying to critique PACE.
 
to add to Toms point:

"I mentioned earlier that the researchers moved the goal posts.

They lowered the threshold of, say, subjective fatigue in order to make it easier, well this is not necessarily the reason they did it but this was the effect of it, it made it easier for patients to be classified as having recovered.


They explained why they did this, because when you do that, when you move the goal posts as the cliché suggests, it looks like cheating.

So they had to defend themselves, and in the written report in the journal they said that the reason they did this is because they pitched too high to begin with. They were asking too much of patients. They were saying that if you had a score of 85, half the population wouldn’t have a score of 85.

It’s what they said, in writing.


And they literally point out, that threshold would mean that approximately half the general working age population would fall outside the normal range. So they said ‘we got it wrong we should never have said 85 so that’s why we’re reducing it to 60’.


But they base this conclusion on prior data showing that the average score was 85. But it was the mean average.

Now I don’t want to be patronising, but in school we learn the difference between the mean, the median and the mode. And on this scale, this fatigue scale, this general functioning scale, the mean is 85 but the median is close to 100. So it is simply inaccurate to say. most people score either 95 or better on this scale.

It’s inaccurate to conclude that just because the average, the mean average is down at around the 85 point, that this means that half the population are above and half the population are below.


The mean average number of arms per human being is close to 2 but its not quite 2, it’s a little bit below because some people have one arm and some people have no arms. That doesn’t mean that half the population have, are above the average and half the population are below, which means that only half the population have two arms and the other half have some other number. That’s not the way means work.


So they moved the goal posts because they said that half the population would be above this old threshold and half the population would be below so its not fair. That is innumeracy. And innumeracy is, as I say in the book, a socially acceptable form of ignorance. It’s unlike illiteracy. You wouldn’t employ somebody who can’t spell but we regularly employ people who can’t count. It’s a big problem in science and in psychology this is a glaring one."

Brian Hughes
see https://www.s4me.info/threads/lives...the-greatest-scandals.5821/page-7#post-119200
 
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Sly Saint said:
to add to Toms point:

"I mentioned earlier that the researchers moved the goal posts.

They lowered the threshold of, say, subjective fatigue in order to make it easier, well this is not necessarily the reason they did it but this was the effect of it, it made it easier for patients to be classified as having recovered.


They explained why they did this, because when you do that, when you move the goal posts as the cliché suggests, it looks like cheating.

So they had to defend themselves, and in the written report in the journal they said that the reason they did this is because they pitched too high to begin with. They were asking too much of patients. They were saying that if you had a score of 85, half the population wouldn’t have a score of 85.

It’s what they said, in writing.


And they literally point out, that threshold would mean that approximately half the general working age population would fall outside the normal range. So they said ‘we got it wrong we should never have said 85 so that’s why we’re reducing it to 60’.


But they base this conclusion on prior data showing that the average score was 85. But it was the mean average.

Now I don’t want to be patronising, but in school we learn the difference between the mean, the median and the mode. And on this scale, this fatigue scale, this general functioning scale, the mean is 85 but the median is close to 100. So it is simply inaccurate to say. most people score either 95 or better on this scale.

It’s inaccurate to conclude that just because the average, the mean average is down at around the 85 point, that this means that half the population are above and half the population are below.


The mean average number of arms per human being is close to 2 but its not quite 2, it’s a little bit below because some people have one arm and some people have no arms. That doesn’t mean that half the population have, are above the average and half the population are below, which means that only half the population have two arms and the other half have some other number. That’s not the way means work.


So they moved the goal posts because they said that half the population would be above this old threshold and half the population would be below so its not fair. That is innumeracy. And innumeracy is, as I say in the book, a socially acceptable form of ignorance. It’s unlike illiteracy. You wouldn’t employ somebody who can’t spell but we regularly employ people who can’t count. It’s a big problem in science and in psychology this is a glaring one."

Brian Hughes
see https://www.s4me.info/threads/lives...the-greatest-scandals.5821/page-7#post-119200
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A letter published in the Lancet in 2011 highlighted this to them and they half acknowledged it in a reply. But in the 2013 recovery paper they kept the 60+ threshold and never published the data for the 85+ threshold.
 
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