Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

[Marky90]

They actually argued that there would be a risk for patients stalking PACE-participants if data is released? First of all - how in the world do you get their names from anonymous data? But more importantly: there is just not a single conceivable reason for that to occur, at all. only in the mind of a paranoid schizophrenic maybe! Or in the world of a PACE-researcher.

The tribunal rightly points out the ludicrous nature of these proposed scenarios.

 

[alex3619]

I cannot speak for every ME advocate, but I want to protect the rights of the PACE participants as well. Patients, globally, need protection.

For my own part, I have been in no less than four studies, though no clinical trials. I made that public over the years. I would have been in more but my complicated health made participation difficult as I get excluded.

I really doubt most patients would mind identification much, but I do agree that it should never ever be forced upon them.

For identification of participants to occur it would most likely be due to either themselves going public, which is their right too, or someone who already has access to the data to allow it to leak, or deliberately leak it. By that I mean anyone who already has a list of participants. Given some data has already been stolen as it was not locked away, this would seem a far more serious concern.

Anonymized data is not a big concern. Finally we have a legal decision recognizing this.

The arguments about militant activists, etc., has never been substantiated. Its political rhetoric. Its nice that this has been publicly recognized, within a legal context.

 

[simeyss]

Just the best news in ages! Thank you and well done to everyone involved (including all those who encouraged their ME/CFS organisations to write in support of the release of the data).

And terrific to have finally acknowledged what we all knew: that the "militant activists", that PACE researchers were complaining about for so long, were a myth. When it came down to it, they could produce no evidence. Great to have it acknowledged in a legal document, and to have the right to disagree about scientific method be upheld.

One step closer to the PACE wake!

 

[TiredSam]

Who is this Prof Anderson fellow? And what planet is he from?

A CFS activist insider involved in a BPS project? Not that they'd be hard to spot - it's the person shuffling around like a zombie looking dazed and babbling a load of nonsense. Hang on a minute - that just might be the perfect cover ...

And rich indeed, considering the BPS insider members we have on PR, reading and reporting back on everything ...

 

[Mrs Sowester]

Can we give Alem Matthees an award, please?

Yes, definitely. Can someone organise an E card please?

 

[Denise]

It is gratifying that the Tribunal made this ruling. Thank you A. Matthees for going the distance on this!

When we have the data (when QMUL actually releases it), that's when I will celebrate.

 

[TiredSam]

No way . Just when I thought it couldn't get any better, I see they are finally referring to QMUL's evidence for what it is:

Well sure, let's get that one out of the closet too ...

 

[Cheshire]

https://twitter.com/i/web/status/765526393367199745

 

[Stewart]

Who is this Prof Anderson fellow? And what planet is he from?

From page 40 of the judgement:
"Whilst we accept that Professor Anderson was an expert witness, he was not a Tribunal appointed independent witness but appointed by the Appellant and clearly, in our view, had some self-interest, exaggerated his evidence and did not seem to us to be entirely impartial. What we got from him was a considerable amount of supposition and speculation with no actual evidence to support his assertions or counter the Respondents arguments;"

Ouch. My interpretation: "Whilst we accept that Professor Anderson was on paper an expert witness, for the purposes of this hearing he wasn't actually an expert witness in any way."

 

[tinacarroll27]

Great news!!

 

[simeyss]

https://twitter.com/i/web/status/765526393367199745

Does this mean that Mental Elf is abandoning ship?

 

[Ben H]

They actually argued that there would be a risk for patients stalking PACE-participants if data is released? First of all - how in the world do you get their names from anonymous data? But more importantly: there is just not a single conceivable reason for that to occur, at all. only in the mind of a paranoid schizophrenic maybe! Or in the world of a PACE-researcher.

The tribunal rightly points out the ludicrous nature of these proposed scenarios.

Its the robustness of the decision, the manner in which it is addressed, that is really gratifying I find. The Tribunal has logically, extensively and decisively addressed so many points and been rather damning where needed (rightly so for the rediculous claims). Perhaps thats why the decision seemed to take longer than expected. Hopefully this will lessen the chance of a further appeal, which would ultimately only bring further ridicule to QMUL.


B

 

[A.B.]

Coyne promises a detailed critique of the mediational analysis paper:

Trudie Chalder used the scarce time allocated to her to appear before the tribunal specifically to continue her attack on my character. She expressed alarm over the threat my criticism posed to the reputation of the PACE investigators. Trudie, vexatious, my ass. You have been rude and unprofessional. You have consistently been refused to debate, but you can look forward to a future detailed critique of your miserable, p-hacked mediational analysis.

https://jcoynester.wordpress.com/2016/08/16/tribunal-orders-release-of-pace-trial-data/

 

[Dolphin]

Can somebody make a text (copyable) version of this file of the ruling or let me know if you see one:
http://www.informationtribunal.gov....iversity of London EA-2015-0269 (12-8-16).PDF

 

[TiredSam]

A most satisfying read. The overall impression is that the Tribunal was having none of it, and they rejected many of QMUL’s arguments by referring to things the PACE Trial, QMUL, or Trudie Chalder had said or done which contradicted their own claims, thus throughout the judgement QMUL were regularly hoisted by their own petard, which was most gratifying.

If QMUL stubbornly insist on appealing even though they have no realistic grounds, wouldn’t it be poetic justice for them find the legal equivalent of a PACE trial author to take their case – ie a lawyer who will be happy to take an obscene sum of money off them, promise to provide a useful service and then deliver something completely ineffective?

 

[Stewart]

If QMUL stubbornly insist on appealing even though they have no realistic grounds, wouldn’t it be poetic justice for them find the legal equivalent of a PACE trial author to take their case – ie a lawyer who will be happy to take an obscene sum of money off them, promise to provide a useful service and then deliver something completely ineffective?

I think this has already happened - assuming QMUL had to pay Professor Anderson a hefty fee for his time and (*cough*) expertise...

 

[wdb]

I uploaded the PDF to Google drive and converted it from scanned images it to text format, it's not quite perfect but pretty close, it is searchable and quotable now. If anyone wants to tidy it up further feel free.

*Edit - this one is even better.

https://twitter.com/i/web/status/765556256992063488

 

[John Mac]

Can we give Alem Matthees an award, please?

This must surely qualify him for a BOB

 

[AndyPR]

If QMUL stubbornly insist on appealing even though they have no realistic grounds, wouldn’t it be poetic justice for them find the legal equivalent of a PACE trial author to take their case – ie a lawyer who will be happy to take an obscene sum of money off them, promise to provide a useful service and then deliver something completely ineffective?

Sadly though, if that did happen, it would be even more taxpayers money down the drain.

 

[Daisymay]

Thank you, Mr Mathees.

A million cheers for Alem Mathees! Thank you, thank you, thank you for all your work on this!