Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

[user9876]

As I've said before, we are being watched.

If any one doubts that we are being watched and that the PACE team see PR as the enemy then look at this thread and the document that Graham shares
http://forums.phoenixrising.me/index.php?threads/queen-mary-and-pace-just-what-is-their-case.46194/

They seem to have issues with the idea that patients discuss the latest research and have opinions. They forget many patients are capable of reading, understanding and criticizing academic output.

 

[adreno]

As I've said before, we are being watched. That's not being paranoid. This was made perfectly clear at the tribunal. Anything said could be used, rightly or wrongly, against participants on these boards. *They* were the ones claiming PWMEs were irrational yet they were the ones wrongfully hiding data and monitoring public forums, exaggerating claims.

It also means they are afraid of us. If not, why would they be watching?

 

[sue la-la]

If not they will probably claim that an anti-PACE intruder have hacked the raw data. Seriously.

or that gremlins attacked ... true story ...
http://me-pedia.org/wiki/Biopsychosocial_model#We_have_been_attacked_by_gremlins

 

[user9876]

or that gremlins attacked ... true story ...
http://me-pedia.org/wiki/Biopsychosocial_model#We_have_been_attacked_by_gremlins

Kings seems to be a burglary hot spot with the PACE trial they had a tape recorder stolen from a desk draw and here they had a computer stolen.

 

[worldbackwards]

https://twitter.com/i/web/status/753959258853629953

It's nice when someone can get the experts in, isn't it.

 

[TiredSam]

or that gremlins attacked ... true story ...
http://me-pedia.org/wiki/Biopsychosocial_model#We_have_been_attacked_by_gremlins

Was it young, male sociopathic or psychopathic gremlins? Were they vexatious? I think these accusations of harassment from gremlins can safely be dismissed as wild speculations. Their assessment of gremlin behaviour is grossly exaggerated.

 

[A.B.]

Was is young, male sociopathic or psychopathic gremlins? Were they vexatious? I think these accusations of harassment from gremlins can safely be dismissed as wild speculations. Their assessment of gremlin behaviour is grossly exaggerated.

Apparently, the gremlins struck only after an error free copy of the manuscript had already been sent to a reviewer. Then the computer with the original draft was stolen. Such is life.

 

[Esther12]

Apparently, the gremlins struck only after an error free copy of the manuscript had already been sent to a reviewer. Then the computer with the original draft was stolen. Such is life.

It did sound to me like the screw up was at the BMJ, rather than at Wessely's end. Not really fair to criticise him for that imo.

 

[user9876]

It did sound to me like the screw up was at the BMJ, rather than at Wessely's end. Not really fair to criticise him for that imo.

There are two screw ups. There is one at the BMJ although Wessely should have noticed the errors in the camera ready copy. Then there is the failure to properly manage trial data so that it could be lost when a computer was stolen (to me that is a real issue of professionalism).

 

[worldbackwards]

Richard Smith, the editor of the BMJ, replied that the errors were "ultimately unimportant", and suggested a dinner be held.

Nice deadpan there from the contributor. Trebles all round then!

 

[Snowdrop]

They seem to have issues with the idea that patients discuss the latest research and have opinions. They forget many patients are capable of reading, understanding and criticizing academic output.

They have a great deal of trouble accepting patients acting as independent agents. They are incredibly cocooned in a world where people just do their bidding it seems. They have such high expectations of freedom to pursue things in their own best interest that anything that punches through from the great unwashed feels threatening. We used to use the term ivory tower--this very much applies to the situation.

Was it young, male sociopathic or psychopathic gremlins? Were they vexatious? I think these accusations of harassment from gremlins can safely be dismissed as wild speculations. Their assessment of gremlin behaviour is grossly exaggerated.

Nice one @TiredSam On a less comedic note it's interesting (in the original context of the tribunal report) I think they may actually have felt this way. That the requests, complaints and back sass they were getting really freaked them out. Who knew.

At any rate, there must be some interesting meetings taking place at QMUL presently. The genie is out of the bottle.
Containment is going to be a tough issue.

And now I'm thinking of it; where does this leave the NICE guidelines? I believe any changes couldn't happen because of some freeze order.

 

[Wolfiness]

What is remarkable to me is the degree to which our mistrust of each other mirrors each other. Horton's characterisation of PACE critics as 'a fairly small, but highly organized, very vocal and very damaging group of individuals who have, I would say, actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients' is exactly how most of us would describe the BPS school. It reminds me of arguing with Creationists where you're each accusing each other of the same fallacies and only one of you is right but neither side is going to convince the other...

 

[snowathlete]

Kings seems to be a burglary hot spot with the PACE trial they had a tape recorder stolen from a desk draw and here they had a computer stolen.

How ridiculous was it that they left confidential personal information from a trial in an unlocked draw, unattended, in the first place. It beggars belief that they have such an unprofessional attitude to the serious issue of security.

 

[me/cfs 27931]

Was it young, male sociopathic or psychopathic gremlins? Were they vexatious? I think these accusations of harassment from gremlins can safely be dismissed as wild speculations. Their assessment of gremlin behaviour is grossly exaggerated.

First of all, keep him out of the light, he hates bright light, especially sunlight, it'll kill him. Second, don't give him any water, not even to drink. But the most important rule, the rule you can never forget, no matter how much he cries, no matter how much he begs, never feed him after midnight.

 

[Ben H]

How ridiculous was it that they left confidential personal information from a trial in an unlocked draw, unattended, in the first place. It beggars belief that they have such an unprofessional attitude to the serious issue of security.

Especially as 'patient confidentiality' supposedly underlines this whole PACE trial saga



B

 

[Wolfiness]

Well the whole idea of a situation where they spend more than £200,000 of public money to defend patient confidentiality as a result of having refused to spend more than £450 of public money on a statistician who would have left patient confidentiality unimperilled is absurd

 

[Kati]

How ridiculous was it that they left confidential personal information from a trial in an unlocked draw, unattended, in the first place. It beggars belief that they have such an unprofessional attitude to the serious issue of security.

Especially as 'patient confidentiality' supposedly undermines this whole PACE trial saga

Their tactics all along have been to dismiss requests for data (vexatiousness) not really answering comments in scientific journals, spending humongous amount of money in legal fee to avoid giving access to de-identifiable data, and calling wolf when saying patients are hunting them and pulling the death threat card. And while these authors are more than happy to accept speaking engagements in psychiatric society and such, none of them ever attended Invest In ME or IACFSME.

So glad the jury saw clearly but interestingly one of the 3 took the side of QMUL for whatever reason.

 

[sarah darwins]

So glad the jury saw clearly but interestingly one of the 3 took the side of QMUL for whatever reason.

I think the dissenting opinion by one tribunal member was on a specific part of the case. There's something about it way earlier in the thread, if you can find it.

 

[Tom Kindlon]

The full decision is at http://www.informationtribunal.gov.uk/DBFiles/Decision/i1854/Queen Mary University of London EA-2015-0269 (12-8-16).PDF

As a brief recap, the ICO had agreed that the PACE data should be released. Queen Mary University of London, where PACE was registered, disagreed and took the case to a Tribunal. The Tribunal has now sided with the ICO, and held that the data should be released.

QMUL can still appeal, but it is extremely unlikely that their appeal would be accepted. And hopefully QMUL doesn't want to go spending more money to support some "researchers" hiding publicly-funded data anyhow

I just re-read this. Came across a few things I understood better the 2nd time.

Not as much of a chore as it could have been as I get some pleasure reading it knowing the outcome!

 

[Dolphin]

I think the dissenting opinion by one tribunal member was on a specific part of the case. There's something about it way earlier in the thread, if you can find it.

Overall it was a majority decision:

We have considered all of the above arguments, submissions and evidence together with the significant volume of supporting literature and legal precedents and for the reasons given above we refuse the appeal by a majority decision for the above reasons, and the Commissioner's DN stands.