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

worldbackwards

Senior Member
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2,051
I'm actually pretty surprised by the broad range of academics who seem very shocked and upset about the refusal to share the PLOS data, without knowing anything about ME/CFS or even caring what it is :p
All credit to him, this is exactly what he was aiming for:
I'm trying to appeal to the scientific community who, I'm sorry they don't know enough about your condition to care. They're going to learn about it gradually but I'm more interested in taking down the bad science and getting them to take down the bad science.
 

Seven7

Seven
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USA
They're delaying the inevitable for a reason.
This is what I have learn, they are preparing 5 or more articles for one bad we will put out. So they are delaying to get ready for the upcoming war. They will have paid articles ready for printed outlets. People's articles which get miraculously "think" their self to get better.

They are preparing the offense so their reputation won't go down. We should be getting ready soon. If you google every time we put one article out, they put like 5 so they buried the search back down.
 

TiredSam

The wise nematode hibernates
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2,677
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Germany
We would expect any replication of data to be carried out by a trained Health Economist.
I would expect any research into ME to be carried out by a trained immunologist or neurologist. Instead of which we have had to put up with this shower of incompetents barging in and subjecting us to their abusive nonsense. Now they are presuming to say who is qualified to look at their data? Rich indeed. They themselves were never qualified to study ME in the first place, and have conclusively demonstrated that they have no knowledge of or respect for the patient population, the scientific method, statistical analysis or anything else that isn't lobbying, smearing, spinning, self-aggrandizing and generally furthering their own interests and those of their shadowy paymasters at the expense of the health of thousands of desperately ill people.
 

ballard

Senior Member
Messages
152
Pace Data Denied copy 2.png


History repeats itself.

For more ME/CFS cartoons go to http://www.cfsgraphics.com
 

jimells

Senior Member
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northern Maine
hey are preparing the offense so their reputation won't go down. We should be getting ready soon. If you google every time we put one article out, they put like 5 so they buried the search back down.

The HMS PACE is sunk no matter how many "Think Yourself Well" stories they write. There was a fire in the coal bunker before it left Southampton. The only question in my mind is, will Captain Sir Simon go down with the ship,or will he "accidentally" slip and fall into a life boat (like that moronic Costa Concordia cruise ship captain). After all, his name is not on the PACE trial studies, he was only a "friend" (or something) of the study.

These people have no shame or honor. It is only a matter of time before they form a circular firing squad. :balloons:
 

SOC

Senior Member
Messages
7,849
The HMS PACE is sunk no matter how many "Think Yourself Well" stories they write. There was a fire in the coal bunker before it left Southampton. The only question in my mind is, will Captain Sir Simon go down with the ship,or will he "accidentally" slip and fall into a life boat (like that moronic Costa Concordia cruise ship captain). After all, his name is not on the PACE trial studies, he was only a "friend" (or something) of the study.

These people have no shame or honor. It is only a matter of time before they form a circular firing squad. :balloons:
It's an interesting question whether they'll throw someone (or each other) under the bus (out of the lifeboat?) or whether they'll put their arms around each other and all go down together singing Nearer My God To Thee
 

Seven7

Seven
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By the way go to Coyne Face book page and share pls. So plp see PACE controversy outside of our circle
 

Mark

Senior Member
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5,238
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Sofa, UK
Interesting that the prompt for Jonathan Edwards to get involved and committed in ME/CFS science was an outrageous, dumb, and simply factually incorrect comment from Jos van der Meer about the Fluge/Mella Rituximab trial. And the prompt for James Coyne to get involved and committed to 'moral equivalent of war' on the PACE trial's anti-scientific practices was offensive comments by Michael Sharpe. And now we see a horde of incredulous scientists, outraged by the extraordinary anti-scientific behaviour they're witnessing from Kings College London as they continue to resist releasing the PACE trial data. Wouldn't it be nice if some of those people became involved and committed to helping out the cause of ME/CFS patients?...

There are quite clearly wider issues in play here, and political issues which go well beyond ME/CFS - and at long last we seem to be connected with those wider battles. The movement towards Open Publication and Open Data has always been contested and resisted by a variety of vested interests - basically everybody with a stake in the status quo. It's a fundamentally disruptive concept for science, but it's an inevitable and necessary progression of the way we do science, and the thing is, there simply aren't any arguments against Open Science that are even slightly convincing.

So the way I see it, the specific wider issues we're currently connecting with are the revolution of open science, open publication, open data...and at the end of the day, the battle for honesty and integrity in science. I do believe that those who seek to defend the PACE authors in their persistent withholding of their data will find themselves on the wrong side of history in that battle.

Friendly advice to any academics seeking to defend The Good Ship PACE (last seen holed below the waterline and leaking like a sieve, somewhere off the coast of Oxford):

mp,550x550,matte,ffffff,t.3u2.jpg
 

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SOC

Senior Member
Messages
7,849
The movement towards Open Publication and Open Data has always been contested and resisted by a variety of vested interests - basically everybody with a stake in the status quo. It's a fundamentally disruptive concept for science...
Uh, no. It may be fundamentally disruptive to a very small segment of scientists in very specific fields and possibly geographical regions, but it's common practice in science in general. Why do you think there's so much outrage arising out of KCL's refusal to release data? On a weekend, no less.

Psychology, medicine, and possibly social sciences have always been the worst offenders in violating basic principles of transparency and reproducibility, and even those fields the idea of open data is not considered "fundamentally disruptive for science" by all researchers. I'd say not even close. I've spent my entire adult life around academics and I don't know a single one who is not in support of open data.

There will always be selfish and corrupt individuals, so regulation rather than relying on accepted practice is a good idea. Codifying what is generally standard practice does not imply the practice is resisted by the majority. It just means the dirty minority need to be forced to do the right thing... just like with social justice laws.
 

ballard

Senior Member
Messages
152
I concur with @Dolphin, right at this time, having one for Kings College would be most useful right now as we are working on a PLOS retraction.

Thx @ballard
Do you mean a name change on the pocket of the lab coat, or do you want another completely new cartoon?
I don't have another idea for a new cartoon right at the moment.

It would be easy to change the name on the pocket if you could use that.
 

Dolphin

Senior Member
Messages
17,568
Do you mean a name change on the pocket of the lab coat, or do you want another completely new cartoon?
I don't have another idea for a new cartoon right at the moment.

It would be easy to change the name on the pocket if you could use that.
Just a name change of the pocket of the lab coat. Thanks.
 

Mark

Senior Member
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5,238
Location
Sofa, UK
Uh, no. It may be fundamentally disruptive to a very small segment of scientists in very specific fields and possibly geographical regions, but it's common practice in science in general. Why do you think there's so much outrage arising out of KCL's refusal to release data? On a weekend, no less.

Psychology, medicine, and possibly social sciences have always been the worst offenders in violating basic principles of transparency and reproducibility, and even those fields the idea of open data is not considered "fundamentally disruptive for science" by all researchers. I'd say not even close. I've spent my entire adult life around academics and I don't know a single one who is not in support of open data.

There will always be selfish and corrupt individuals, so regulation rather than relying on accepted practice is a good idea. Codifying what is generally standard practice does not imply the practice is resisted by the majority. It just means the dirty minority need to be forced to do the right thing... just like with social justice laws.
Open Data as I understand it certainly hasn't been 'common practice' in science, at least until the last 5 or 10 years. It has long been understood that it's an important principle in science, but it was only in 2004 that OECD members signed the declaration that it should become mandatory for all publicly-funded research - and the PACE trial's funding was approved only shortly before the MRC got its policy and procedures in place to make open data a mandatory requirement for grant approval (I think I'm right in saying that if the PACE researchers had applied for funding a year or so later than they did, they would have been compelled to share the data as a matter of course, just like everyone else has to nowadays). This accident (or not) of timing may perhaps explain why they seem like such dinosaurs right now. The open data rules that came in soon after they began the PACE odyssey may finally be catching up with them.

I spent about a year researching and working in the area of Open Data, in an IT context, only 2 or 3 years ago, and it was clear then that everyone was still in the relatively early stages of working through the quite radical practical implications and technical difficulties involved in publicly sharing their data. We may have our wires crossed, but what I'm talking about is certainly a relatively recent development. The wikipedia article on Open Data is reasonably good on this; it does explain how the internet age is in the process of changing what we mean by 'open data'. I'm not as familiar with what was common practice in the past, in a variety of countries and contexts, in terms of researchers sharing their data with each other, but the publications themselves, let alone the data, were certainly not freely available and readily accessible to the public in the past, and that's what I understand by Open Data.

I agree that the practice of open data has not been resisted by the majority of practicing scientists (and I didn't say it had been), but it has been resisted by many journals, academic institutions and academics who have a variety of vested interests - and yes, in some cases, dodgy research - to protect. The whole debate is not necessarily only about dodgy science though; the wikipedia page I linked to sets out a list of arguments for and against open data, which clearly illustrates that there is an ongoing debate about where the lines should be drawn. It's a matter of opinion as to whether everyone arguing against open science is dodgy and corrupt, and personally I don't think I would go that far. I think many of them are just wrong.:D
 

CFS_for_19_years

Hoarder of biscuits
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2,396
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USA
Should Ben Goldacre be sent retweets of the growing number of appauled academics to see if he still wants to remain silent over PACE?
Naaaaaaaaaaaaaah

These people have no shame or honor. It is only a matter of time before they form a circular firing squad. :balloons:
One can only hope to see them form a circular firing squad.......sigh.......although they should be well-acquainted with circular formations from their experience with their self-congratulatory circle-jerks.
 

Esther12

Senior Member
Messages
13,774
Thanks to those letting us see the interest this was getting elsewhere. Pretty fun reading.

Also thanks a lot to all those who've been slogging through the swamp of PACE all these years, building to the point where even all the prejudices around CFS can be overcome, and people will start looking seriously at the concerns we've all been raising about CBT/GET research and how it's sold to patients.
 

SOC

Senior Member
Messages
7,849
I'm not as familiar with what was common practice in the past, in a variety of countries and contexts, in terms of researchers sharing their data with each other, but the publications themselves, let alone the data, were certainly not freely available and readily accessible to the public in the past, and that's what I understand by Open Data.
The Wikipedia article you linked says this:
The concept of open data is not new; but a formalized definition is relatively new—
and this:
For example, many scientists do not regard the published data arising from their work to be theirs to control and the act of publication in a journal is an implicit release of the data into the commons. However the lack of a license makes it difficult to determine the status of a data set and may restrict the use of data offered in an Open spirit.
This argues against your statement that openly sharing data is "a fundamentally disruptive concept for science" and for my argument that open data sharing has been going on routinely for years and is therefore not a fundamentally disruptive concept for science.

None of the objections to open data sharing in the Wikipedia article have anything to do with it being fundamentally disruptive to science. The objections are primarily economic in that government agencies or non-profits may, in some circumstances, want to recover the cost of producing data such as demographic statistics or map production. That is an entirely separate matter from the science.

It is certainly true that publications are not all freely available. There has always been a financial interest on the part of journals to prevent free access to all publications. That a journalistic issue, not a scientific one.

I worked in US government funded research and we were required by regulation to make our data freely available. We did so as a matter of course. Maybe things are different in the UK.

If you are saying that there has not been a standard procedure for the open sharing of data, I will agree with you. As far as my experience and that of my colleagues goes, data sharing has always been rather informal. Someone asked for your data and you gave it to them in whatever reasonable format you had. If by Open Data you mean a formal process and format for data-sharing, then I agree that is new. Openly sharing data is not, by any means.

Openly sharing data most certainly is not a fundamentally disruptive concept for science. NOT sharing data is a fundamentally disruptive concept for science. Without data sharing there would be no critical assessment, no replication, and no continuation of preliminary research... all fundamental to science. Science might as well be fiction if scientists could say whatever they wanted without having to back it up with their data.
 
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