REC advice on PACE trial data changed in favour of release

[rvallee]

The real question of course is: Why are the PACE authors so terrified of expert scientific scrutiny of their data? Surely it could not be fear of exposing even more research flaws? Maybe even worse? Their behaviour makes it very clear it is very unlikely to be mere concerns about patient confidentiality, but much more likely highly selfish reasons. At the very least they should allow the scientific community access to it, and not just their trusted disciples; scientists with good track records (not 'eminence') of understanding and applying good scientific research methods.

People who commit fraud rarely want others to understand the details of the fraud. It's no more complicated than that. This wasn't an accident. It was deliberate and they know what they did, understand the consequences of being found out. Honest scientists have no problems with independent verification. In fact they welcome it.

Volkswagen was equally motivated in keeping their emissions testing data secret. Because they knew what they did. Once exposed it cost them billions. That was their motivation: not being exposed.

I know some are wary of outright calling it fraud. I'm not. It absolutely was. People died because of this fraud. Millions continue to suffer. They understand that, to a point. That's the motivation.

 

[Seven]

I know some are wary of outright calling it fraud.

What drives me crazy, even if you don’t call it fraud, is people still think they are “stupid”, or that it was a mistake. Even though they have press releases in a coordinated way, every time they see themself attacked. I mean this is so obvious, that when PLp call it what is not, it drives me insane. Even if you don’t call it fraud for the love of God, don’t call it unintentional.
The minute we start calllig the horse by its name, maybe we will
Get that crowd to act less shamelessly. At this point the nerve of this people!!!!

 

[Sean]

I am willing to publicly accuse the PACE Principal Investigators of scientific fraud in their handling of actimeters.

The trial meeting notes (obtained via FOI) have shown that they clearly wanted to avoid using that objective measure at outcome because they had learned since the start of the PACE trial that it would most likely deliver a null result.

They actually said that. On the formal record. Their own words.

An objective outcome measure, that the PIs themselves chose to use, was ditched halfway through the trial because it would probably refute (falsify) their preferred explanatory and therapeutic model.

Furthermore, the public reason they gave at the time, also on the formal record, – that the patient organisation involved in PACE (AfME) had requested the PIs to do so because the (<50 gram) actimeters were an 'undue burden on patients' – has now been exposed as a bald-faced lie.

Fraud by any other name smells just as rotten.

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re: patient confidentiality and potential abuse of anonymised data

This was, of course, the argument used against releasing PACE data in the Matthees case, but which was robustly and unanimously – and quite rightly – dismissed by the tribunal.

The question that now needs to be put to the PACE defenders whenever they try that argument is:

Can you show any evidence of misuse or abuse of the Matthees case data in the 3 years since it has been publicly released? Or of any other PACE data or information that has also been publicly released?​

I bet they can't. Because it has not happened.

To the contrary, it has clearly been used for entirely legitimate and serious purpose, typically via the appropriate formal forums and governance processes.

It is not patients who have misused and abused that data.

 

[Mithriel]

They didn't mention patient confidentiality at first. It was something they came up with after their other reasons failed.

I seem to remember one of their arguments went that if people got the data they would misrepresent it and bring the university into disrepute so overseas students would not want to study there so they would not have enough money so the whole university would fail.

 

[feeb]

That sounds like what psychotherapists would call "catastrophising". Perhaps they need to go on a course of CBT?

 

[rvallee]

That sounds like what psychotherapists would call "catastrophising". Perhaps they need to go on a course of CBT?

They do claim conspiracies in every dark corner, attempting to... do... things. Things they can't explain or show but trust them, they see them, they see them right now, making FOI requests and reanalyzing partial trial data, using maths to discredit, even special editions of scientific journals. This is truly an exaggerated response to perfectly normal bodilyacademic senses. All super rational.

 

[NelliePledge]

That sounds like what psychotherapists would call "catastrophising". Perhaps they need to go on a course of CBT?