Coyne - What it takes for Queen Mary to declare a request for scientific data “vexatious”

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worldbackwards

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Clearly he's pretty much in line with the establishment view, but it's encouraging that even then he thinks that openness is better than concealment. The more open this is, the worse it becomes for the trial authors. Excellent that he brings in the QMUL decision as well.
 
Simon

Simon

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Richard Smith said:
The emotion stems from sufferers from the condition resenting greatly the idea that it may have psychological causes with the stigma that implies. The resentment seems to be that psychological problems are not seen “real” in the way that physical ones are and that they may result from “moral weakness” rather than a morally neutral virus. I’ve always disliked the stigma that goes with mental illness and any idea that it is not as real or serious as physical illness. But at the same time neither I nor The BMJ had a line on the causes or treatments of chronic fatigue syndrome.
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This line gets rolled out every time, even though the criticisms focus on poor science and misrepresenting the findings of an important trial (eg failing to give due weight to the recent null result for PACE). It does suggest that Smith and others using this line don't listen too well to the critics.

Explaing why he thought the data should be relesased Richard Smith said:
Firstly, the inevitable conclusion is that they have something to hide. This is the age of transparency, and, whether people like it or not, what is not transparent is assumed to be wrong, corrupt, or biased until proved otherwise. I think of a scene from Not the 9 O’Clock News where we see pictures of a house with its roof blown off by a hurricane. “We rang the Gas Board, and they answered “no comment.’” We are led to think that the Gas Board is responsible for the hurricane.

Secondly, QMUL and King’s are going against basic scientific principles. In Popperian science we pose falsifiable hypotheses and then do all we can to tear them down. Hypothesis are never true, they are simply not falsified. This process should include other scientists being able to manipulate the data.

...Finally, the universities may have failed to notice that customs around sharing data in science are changing rapidly. We have recognised that huge value is lost by scientists taking their datasets to the grave with them. More and more funders of research require the release of data they have funded, and journals like F1000Research require authors not just to make their data available on request but actually to submit their data with their study so that anybody can use the data either to confirm or refute the study or do other studies.
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Nice to see Simon Wessley tweeting this blog (he's at King's and was until recently Dean there).
 
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Simon

Simon

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W

worldbackwards

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Simon said:
This line gets rolled out every time, even though the criticisms focus on poor science and misrepresenting the findings of an important trial (eg failing to give due weight to the recent null result for PACE). It does suggest that Smith and others using this line don't listen too well to the critics.
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I think it's been repeated so often that it's almost unchallengable. A similar, though less strident line was taken on the Retraction Watch piece, that patients were opposed because of the impression the trial might give about ME being psychological rather than physical.

I suppose it's seen as a bit like when people dance around their reasons for disliking gay marriage, when the real reason is often just "gays? eugrhhh!" It doesn't matter how often we talk about bad science, lack of access to effective treatments and the rest, the assumption will always be that we don't want the stigma. I've been sick for fifteen years; if their treatments or diagnosis made me any better or gave me a useful and coherent understanding of my illness I wouldn't give a damn about the stigma.
 
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leela

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Not to mention that trotting out this familiar trope
"The emotion stems from sufferers from the condition resenting greatly the idea that it may have psychological causes with the stigma that implies"
fails to address, every time, that it is not the freaking stigma of mental health labels patients object to, but the medical neglect that ensues when biomedical treatments are denied as a result of such an ignorantly exclusive diagnosis.

They know full well when they are writing such tripe that they are ignoring this crucial and life-endangering point. Look at Karina Hansen, being denied medical treatment for going on three years, still held literally prisoner to these views.

No other medical treatment on planet earth would a) hold their victim hostage against their will b)fail to admit therapy was not successful after a three year period without improvement c)fail to provide adequate medical intervention when a person in their care was getting visibly worse d)refuse the patient access to their social, medical and legal networks.

I'm sick of this willfully misleading song and dance. Really really fed up now.

ETA: cross-posted with others above :)
 
elliepeabody

elliepeabody

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Richard Smith also said this
This process should include other scientists being able to manipulate the data. Now it is true that “if you torture the data enough they will confess,” and those who disbelieve the results of the PACE trials will probably be able to come up with analyses that contradict the results of the trial authors. But critics finding results that contradict those of the authors doesn’t mean they are right. Supporters of the original authors and neutral scientists can also work with the data
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It will be very interesting to see what the 'neutral scientists' find if they ever get the opportunity to study the data. Also some irony in that those who are critical of PACE may be able to contradict the analysis of the trial authors - appears to be saying that the trial authors analysis is automatically 'good' and any critics automatically 'bad'.
 
S

Sasha

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leela said:
Not to mention that trotting out this familiar trope
"The emotion stems from sufferers from the condition resenting greatly the idea that it may have psychological causes with the stigma that implies"
fails to address, every time, that it is not the freaking stigma of mental health labels patients object to, but the medical neglect that ensues when biomedical treatments are denied as a result of such an ignorantly exclusive diagnosis.
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I've posted a comment on this (and another thing, both held in moderation). I know this is irritating but if that trope is out there, RS just gave me a golden opportunity to bust it open on a major platform so thank you, Dr Smith. :thumbsup:

The tide is turning our way, folks!
 
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elliepeabody

elliepeabody

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Smith also said
I fear that QMUL and King’s are defending the indefensible and like King Canute failing to stop a tide that is coming in fast.
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Thing is as I understand it Canute knew the limits of his power, it might not necessarily be the same for the PACE PI's (or at least not yet). Coyne mentioned the Streisand Effect earlier in the week and it does seem to be gathering pace.
 
S

soti

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What do we have to do to be heard on the point that we don't give a toss about mental health stigma? (NOT make phone calls to researchers' spouses... that sounds super creepy. :( )

Would a campaign where we support people with mental illness and speak out against stigma against mental illness do any good? Maybe? Sigh. Of course mental illness is real. I don't care if I have one or not.

If this is what being "taken seriously" looks like from that crowd... I'd hate to see the alternative.

Otoh yay science. This guy is part of a scientific community and is behaving like it. He gets a cookie for doing his job.
 
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