Michael Sharpe skewered by @JohntheJack on Twitter

And google all the reanalysis authors to see how objective they are.
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The point that seems alien to MS, is that good science - really good science - effectively controls against bias. People inevitably have bias (they can't not have), which is why scientific papers have to be underpinned by facts and scientific rigour, not merely subjective opinions and lax science. Again MS misdirects by suggesting that because people have a bias, that inevitably renders their work to be biased; maybe he speaks from personal knowledge here. A key point of scientific rigour surely, is to avoid personal bias by relying on methods largely immune to bias. Nothing is perfect of course.
 
Indigophoton said:
Since MS has a record of expressing strong views on ME, he's now confirmed himself as, in his own estimation, probably biased :p
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Everyone has bias, it's what you do or don't do with it that counts. Sticking to rigorously good science practices (both in trials and papers) seems a good way for those with integrity to help ensure any bias cannot filter into their work.
 
Trials are regulated unless you are able to blag your way round the system by changing things 1/2 way through but not being exactly open about what you’re doing. Oh sorry I’m being opinionated and political whereas the PACE team were a bunch of saints who did everything entirely appropriately. #healthycynicism
 
NelliePledge said:
Trials are regulated unless you are able to blag your way round the system by changing things 1/2 way through but not being exactly open about what you’re doing. Oh sorry I’m being opinionated and political whereas the PACE team were a bunch of saints who did everything entirely appropriately. #healthycynicism
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Lets not forget also the promised and delivered fast tracking of the PACE trial by the Lancet.
 
Barry said:
People inevitably have bias (they can't not have), which is why scientific papers have to be underpinned by facts and scientific rigour, not merely subjective opinions and lax science.
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Actually human bias is just a small component. Confounds in cohort selection, for example, can severely alter outcomes if some factor is involved that affects the outcome and was not dealt with by randomization.

Systematic biases, like in using the Oxford criteria, are also a big issue.

The selection of outcome criteria is major too. If you measure the wrong things the study is worthless. Oh ...

PACE had one of the WORST biases build in. The use of SD on population data for SF36PF is not defined. Its problematic. It results in highly skewed results. PDW wrote a paper on this in 2007. With the specific data in PACE it also necessarily requires the rise of the Superhumans, those who have score over the maximum of 100. Such a blatant and deliberate abuse of standard deviation is deliberate manipulation of data. No question.
 
arewenearlythereyet said:
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Although on reflection Yoda isn’t on the dark side so it’s not a match in terms of personality.

ETA oh dear I didn’t realise this thread had been posted on S4ME Facebook maybe my comments too flippant I’m thinking of deleting? Sorry getting mixed up it is the NICE workshop one I will leave sarcasms here
 
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Barry said:
I think MS is saying that they measured various different things in PACE, physical function, fatigue, etc, etc, (but all self reported note), and it was a blend of all these things that gave them their published definition of recovery. He seems to be saying that even if one or two of the things measured were atrociously bad for some people, once blended with their other measures ... the blended end result came out OK according to their interpretation. When he glibly and obtusely says "it is multi-dimensional", I think this is where he is coming from.
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Well this is just an attempt to save his house of cards. If this was acceptable behaviour then drugs could be approved by not passing clinical trials but by researchers saying they liked it and the FDA saying this is good enough to approve it...

Barry said:
So to me this sounds like: Suppose you were victim of a car crash and ended up with all sorts of things wrong with you, and they took you in for a period of treatment. After some months MS et al might deem you recovered if you said your damaged neck was not too too bad now, and your broken ribs seem to be mending OK, even though your broken ankle for some reason has never healed, and if anything is now worse. It's as if MS, overall, would look at the list of 10 things or so they originally measured your health by when starting treatment, and so long as most of them were OK'ish now it wouldn't matter that your ankle was still extremely painful and you still couldn't walk and it might now never heal properly; could tick the you off as an overall plus and forget about you. And of course everything is just based on your own self reporting.
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I like this analogy, so patriarchal, so empty, so ridiculous except to those who believe in treating people badly or don't know enough to not fall for it

Barry said:
The PACE recovery paper allows someone to be deemed recovered, even if they report their physical function to still be atrociously bad, worse in fact than to be to be allowed onto the trial in the first place. MS argues, I believe, that such a person could only be deemed recovered if their other measures were good enough to 'counteract' the bad physical function, so their blended overall result still came out as a 'pass'. Most other people see that the final blend is by no means all that counts - if something as fundamental as physical function is still atrocious (worse, even, than they could have been allowed onto the trial with), then no-way-no-how can the person be considered recovered.
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That is probably the easiest for the observer to understand talking point, we know the technical stuff but we can't expect a laymen to, but this is so ridiculous that it makes the point for anyone who hears it. Of course the reality deniers who wrote it and their apologists won't accept any proof of their malfeasance, they can't otherwise they are in lots of hot water...
 
Barry said:
I think MS is saying...
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I'm not sure there's much point trying to second guess what he is saying. Much of it is post hoc. And besides, reducing one of the criteria (PF) to well below the criteria set for improvement (>75 or >70) doesn't make any sense at all, even if combined with other measures.

Also, the KCL website summary on the whole recovery thing is very vague - PW is quoted as saying: "We focussed on recovery from the current episode of the illness", although how you can possible tell that from the data they used, I have no clue. In fact, all the quotes on that page say slightly different things.
 
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MS: "But a regulated trial makes it very hard to bias the results."

That simply isn't true. But it is quite baffling that no-one on the steering committee spotted that they were overseeing an unblinded uncontrolled study with subjective composite endpoints. Bias galore!

Oh, but psych studies have been doing it that way for decades! Well, yeah... and... errr... yeah!

The main problem they have is that they simply don't understand the measures they have invented (CFQ). They don't know how it works, what it says, how to interpret it, how it varies within and between participants (I could go on all day...). They then don't understand what happens to it when you interfere with it (and PF) using the interventions. Subjective measures are not stable - which is why you need associated objective measures to make sure things stay on track (and to detect any bias). Any divergence means you shouldn't be using them any more. Instead, they interpreted that to mean that it was the objective measures that should be chucked. *facepalm*
 
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Sean said:
Dear Prof Sharpe

Could you please supply the references cited in the PACE papers for this latest unicorn farting fairy floss rainbows claim.

Yours, etc

A Mere Patient
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A single patient means nothing to him, as long as science doesn't turn on his miraculous 'treatment'. Thats the whole point of these games, a desperate and doomed to failure ploy to prevent anyone important from realizing the emperor has no clothes and funding real research.
 
Lucibee said:
We focussed on recovery from the current episode of the illness
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Which of course is absurdly unscientific, implicitly admitting they did not focus on recovery in any real sense of the word at all! In this statement PW was admitting failure to achieve any kind of real recovery, effectively stating that more episodes would follow. Every time they skirt around one truth, they open up another hole to drop themselves into. One day, when their chickens come home to roost, there will be so much of this sort of material available.
 
Barry said:
Which of course is absurdly unscientific, implicity admitting they did not focus on recovery in any real sense of the word at all! In this statement PW was admitting failure to achieve any kind of real recovery, effectively stating that more episodes would follow.
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If they show that CBT and GET can cause recovery on an episode-by-episode basis, that means sufferers have to keep going back every time they have an episode. An army of dependent sufferers for ever - how many jobs for the boys and what kind of an empire would that create?
 
TiredSam said:
If they show that CBT and GET can cause recovery on an episode-by-episode basis, that means sufferers have to keep going back every time they have an episode. An army of dependent sufferers for ever - how many jobs for the boys and what kind of an empire would that create?
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Isn't that just pacing anyway, to get maintain a low ceiling level in an incurable neurological disease. If its not pacing I am at a loss to understand what is.
 
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michael sharpe@profmsharpe
26 May
Replying to @Katiissick and 2 others
Bias is everywhere. That's why trials are so regulated and supervised. Being a patient may not be a bias. A record of expressing strong views on the subject over a long period probably is.
Tom Kindlon@TomKindlonAre you saying neither you, Peter nor Trudie (nor the other authors) have a record of expressing strong or particular views on the subject over the years?

Or are you admitting one or more of you have a bias?
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"Bias is eveywhere".

But the wonderful scientific community are self correcting?

Interesting however when the FOI hearing happened Trudie Chalder contradicted this notion by admitting the Cochrane review wasn't independent because 3 of the PIs from PACE were on the review panel.

She had to do that in order to attempt to claim that they hadn't previously shared data with outside groups to attempt to defend themselves from not releasing data to other groups on request.
 
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