Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

[Kati]

It's self-preservation.

Hello @AR68

Welcome to the forum and thank you for providing input from your own point of view, having attended the hearing.

It seems to me that the PACE authors are defending themselves using more and more desperate tactics. Interesting times.

MAny of us have been blocked on Twitter by Sir Simon, so if you see anything worthy of showing here, by all means, share away.

 

[AR68]

Hello @AR68

Welcome to the forum and thank you for providing input from your own point of view, having attended the hearing.
It seems to me that the Pace authors are defending using more and more desperate tactics. Interesting times.

A fair-sized part of QMUL's strategy, seemingly, was to suggest that some patients were unbalanced enough to mount threats or attacks. As you know, Charles Shepherd attended some of the public sessions. David Tuller, Joel Winston and myself attended all of the public sessions. I would love to hear what CS and DT made of it all.

 

[Kati]

A fair-sized part of QMUL's strategy, seemingly, was to suggest that some patients were unbalanced enough to mount threats or attacks. As you know, Charles Shepherd attended some of the public sessions. David Tuller, Joel Winston and myself attended all of the public sessions. I would love to hear what CS and DT made of it all.

@charles shepherd is on the forum. Not entirely sure how comfortable it is for him to speak up in such a public forum considering his position.

 

[AR68]

Just going through my 'end of day' notes (made after tribunal packed up for the day) and am reminded that Anderson actually provided a lot of new evidence on the day which was not in his original statement.

 

[Sasha]

I noted with interest Simon Wessely rather distancing himself on Twitter from Anderson.

Do you have a link? I just looked and couldn't see anything.

Edit: I'm not on Twitter and only see what anyone can.

 

[AR68]

Do you have a link? I just looked and couldn't see anything.

Edit: I'm not on Twitter and only see what anyone can.

https://twitter.com/i/web/status/765604602041466880

 

[user9876]

Anderson exaggerated. I feel I can say that since it comes out in the judgment. He appeared to me rather sure of himself perhaps bordering on arrogant. QMUL appeared to had taken a gamble - which backfired.

He essentially likened the patient community to radicals and extremists. Personally I thought his evidence was disgraceful in its denigration.

I think Arrogant is a word that could describe Anderson,

The Commissioner asserts ‘motivated intruders' evidence from Professor Anderson was accepted under crossexamination as an ‘overextension' from his personal experiences with completely unrelated animal rights activists — see para.24 of the closing submissions. Professor Anderson’s “wild speculations” about the possibility of "young men, borderline sociopathic or psychopathic" attaching themselves to the PACE trial criticism “do him no credit". Nor do his extrapolations from benign Twitter requests for information to an “organised campaign” from an "adversarial group" show that he has maintained the necessary objectivity and accuracy that he is required to maintain.

I assume he was there as an expert in information security and although he is an academic in that area I don't think he has any practical experience. I think this is clear from the way he didn't do his research into the threat environment but instead just made wild guesses rather than understanding the actual threat. That shows a lack of practical experience or just the arrogance to jump to quick conclusions.

I seem to remember Anderson ran a campaign against researchers who were developing trusted computing technologies accusing them of wanting to control everything and enforce DRM. When it was a genuine attempt to improve security. So I wonder how that compares to patients criticizing PACE - as a Cambridge professor he was of course in a position of power and given a platform unlike patients.

 

[AR68]

I think Arrogant is a word that could describe Anderson,



I assume he was there as an expert in information security and although he is an academic in that area I don't think he has any practical experience. I think this is clear from the way he didn't do his research into the threat environment but instead just made wild guesses rather than understanding the actual threat. That shows a lack of practical experience or just the arrogance to jump to quick conclusions.

I seem to remember Anderson ran a campaign against researchers who were developing trusted computing technologies accusing them of wanting to control everything and enforce DRM. When it was a genuine attempt to improve security. So I wonder how that compares to patients criticizing PACE - as a Cambridge professor he was of course in a position of power and given a platform unlike patients.

Given that the case was all about freedom of information, his role in assessing risk involved in that was key. Presumably QMUL would have been aware in some way of what his evidence was going to consist of (if any legal people would like to clarify the status of that...?!) therefore, arguably, they played a risky strategy IF they knew what he was about to claim as potential scenarios. Either way, his evidence was remarked on, at the time, as being somewhat far-fetched.

 

[Stewart]

Given that the case was all about freedom of information, his role in assessing risk involved in that was key. Presumably QMUL would have been aware in some way of what his evidence was going to consist of (if any legal people would like to clarify the status of that...?!) therefore, arguably, they played a risky strategy IF they knew what he was about to claim as potential scenarios. Either way, his evidence was remarked on, at the time, as being somewhat far-fetched.

Reading the judgement, I got the impression they (QMUL) expected the Tribunal to accept the newspaper cuttings and forum transcripts as evidence that ME activists were extremely dangerous and highly organised and committed - which might have made Professor Anderson's proposed scenarios seem a bit more plausible. I have the impression that the tribunal's refusal to take the newspaper articles at face value knocked out a major plank of the case QMUL were hoping to build.

@AR68 - do you have any recollection of what the evidence was that QMUL presented about the alleged 'campaign of harrassment', and what (if anything) was said about it during the hearing?

 

[AR68]

Reading the judgement, I got the impression they (QMUL) expected the Tribunal to accept the newspaper cuttings and forum transcripts as evidence that ME activists were extremely dangerous and highly organised and committed - which might have made Professor Anderson's proposed scenarios seem a bit more plausible. I have the impression that the tribunal's refusal to take the newspaper articles at face value knocked out a major plank of the case QMUL were hoping to build.

@AR68 - do you have any recollection of what the evidence was that QMUL presented about the alleged 'campaign of harrassment', and what (if anything) was said about it during the hearing?

Chalder talked about places like PR and campaigns mounted to ruin the trial. She did mention possible attacks on researchers. The death threat was brought up. She said she felt intimidated by the incident a week or so earlier.

Can't really add too much more as the already sparse notes were knocked on the head by the warning :-(

 

[Valentijn]

He essentially likened the patient community to radicals and extremists. Personally I thought his evidence was disgraceful in its denigration.

This is pretty much in-line with QMUL's general approach in attacking patients to protect the PACE researchers.

Presumably QMUL would have been aware in some way of what his evidence was going to consist of (if any legal people would like to clarify the status of that...?!) therefore, arguably, they played a risky strategy IF they knew what he was about to claim as potential scenarios.

They spent £200K-250K on legal fees for this appeal, so the attorneys certainly should have scripted and rehearsed everyone. With his "crazy patient" line of argument matching up with QMUL's own "crazy patient" arguments, he almost certainly at least had talking points prepared for him. Whether or not he also went off on his own, or was asked unexpected questions, is another matter

I have the impression that the tribunal's refusal to take the newspaper articles at face value knocked out a major plank of the case QMUL were hoping to build.

I think they were trying to use the statements in the articles as proof of militant extremism, threats, etc. Except that would be hearsay, and unless the threatened person is dead, they need the actual recipients of any supposed threats to testify in court in person, where they can't lie and can be cross-examined to determine relevant details. But they simply can't testify for the Tribunal via the media 5 years ago.

So that's probably why the Tribunal was only looking at the comments made by actual patients in response to those articles, as those comments would offer some somewhat direct proof of QMUL's claims. There was nothing else in those articles which the Tribunal could consider as evidence, and QMUL's legal team really should have known that.

 

[Stewart]

There was nothing else in those articles which the Tribunal could consider as evidence, and QMUL's legal team really should have known that.

Yeah - given its importance to their case it's genuinely surprising that QMUL didn't have more substantial evidence to back up the "crazy patient" angle - unless of course there isn't any real evidence to back up the allegations the BPS crew have been making the past half decade, and this was the best their legal team could manage....

 

[worldbackwards]

unless of course there isn't any real evidence to back up the allegations the BPS crew have been making the past half decade, and this was the best their legal team could manage....

You can virtually see their hands flapping in the air in some of the quotes from the ruling.

 

[AR68]

thanks @Stewart, I read that when I was skimming the pdf but could not find it when it came time to write a comment.

and it is kind of genius isn't it. On record, in front of people who cross-examine them all that nonsense just evaporates. I wish we had a transcript or video.

And journalists who a) gave a damn, and b) were upset about being mislead.

Going back to your post here, I'd just like to say something about the reporting (or not) of this case.

As you know, we were told not to take "verbatim" notes otherwise we'd be 'done' for contempt of court. Also as you know, very little about the case made it online between the hearing and the judgment. I fully understood that comments, perhaps taken out of context, might jeopardise the case and/or land someone in trouble - I was not going to be that man - but were the instructions given to us too strict compared to other hearings?

Immediately in front of us were the QMUL crowd. Some of them - nameless - were looking back at us and reporting that we were taking notes. Now, how were we supposed to make aide-memoires of the proceedings? Given that QMUL were in the 'witness box', how were we supposed to convey their evidence to an interested group of people unable to be present?

As I said, I understand the danger of jeopardising a case but I now cannot tell you the detail of what they said. We in the 'public gallery', very arguably, were made to feel somewhat intimidated by the warnings, hence we gave up taking notes of any sort.

There is perhaps an issue of lack of transparency here I'd suggest.

 

[Sean]

Yeah - given its importance to their case it's genuinely surprising that QMUL didn't have more substantial evidence to back up the "crazy patient" angle - unless of course there isn't any real evidence to back up the allegations the BPS crew have been making the past half decade, and this was the best their legal team could manage....

I too am surprised at just how weak their evidence was on this stuff.

When the time came for these arse clowns to put up or shut up, to lay their years of damning evidence on the table before a proper formal high-level legal hearing, and prove for once and for all what a bunch of deluded dangerous ingrates we patients are,... what did we get?

One person felt a bit heckled once, for a few moments, at a public conference. Or something.



Is this the tragedy or farce phase of the historical cycle? Just for the record.

 

[Deepwater]

Are you sure about that? QMUL's latest published financial statement gives a balance sheet at 31 July 2015 (on p.22) stating both total funds (reserves) and net assets of £332m. Surpluses (income minus expenditure) for 2014 and 2015 are stated on p.21 as £17m and £19m respectively.

I can think of organisations that are more hard up than QMUL.

Indeed, Mark, the figures are very large, but you have:
a) not quoted my next observation, viz "... - but financial arrangements with private industry can muddy the waters"
b) not looked at QMUL's expenditure
c) not looked to see how much difference those financial arrangements with private industry have made to their figures.
Universities now rely on outside sources of funding to keep them going - public funding is no longer anywhere near adequate. Some institutions are more successful in that regard than others. So I'm very grateful to whoever it was posted the link to QMUL's financial reports.
In 2014-5 QMUL made a profit of £37 million. But without the private grants and contracts that would have been a loss of £56 million. (Without overseas students the annual loss would be over £100 million, but let's not worry about the poor students.) So, indeed, QMUL would appear to be very successful in attracting private funds.
My question really concerns the pot from which the money for these appeals has come, if it is at all identifiable. The public grant is so mean that they surely couldn't justify taking the appeal costs out of that - that really was my point (it's often been said on these forums that they're wasting public money). I take UKXMRV's point that they almost certainly have something like professional indemnity or legal costs insurance, but I wonder whether any sensible insurance company would go on paying out for repeated appeals, and wouldn't QMUL find that by doing so their future insurance would become extremely expensive? These are just questions - I don't know the answers.
What I do notice in these figures is that QMUL has a sizeable reserve, so they could also have dipped into that.

 

[worldbackwards]

I too am surprised at just how weak their evidence was on this stuff.

I think a some of us (including myself) have assumed that there's some other part of the internet and/or world where there really was some group of real hardcore activists who really get carried away and go after the researchers. I think that, if this was ever the case (and it may have been), this ruling lays that idea to rest in the present.

All there is is us, bitching about our lives and the bits of research they do that help to make things worse. That. Is. All. The PACE researchers quite literally have nothing whatsoever.

 

[A.B.]

There is a way out of this mess for QMUL. They must release the data immediately, denounce the behaviour of the PACE authors as well as their lack of scientific integrity, excuse themselves with people who had requested the data as well as patients, and thank the critics for their important contributions.

In other words, they might just save their reputation if they demonstrate a strong committment to scientific integrity.

We all know that PACE is huge scandal. If they continue protecting PACE it's going to ruin their reputation.

 

[Daisymay]

If they continue protecting PACE it's going to ruin their reputation.

It will FURTHER ruin their reputation. QMUL and the Lancet have already blighted their reputations with their handling of PACE and their failure to "demonstrate a strong committment to scientific integrity" and care and concern for patients.

 

[Flash of Hope]

I know that it would be difficult to prove the harm. But they are especially guilty because they modifyied the results of PACE study, they did their own misinterpretations of the results which they know were incorrect and the science will prove soon that to push the patients for physical activity is the worst. So they are completly guilty in my eyes. There are only 2 reasons - they pushed their interpretation because they wanted to make profit from it - so they are completly guilty or they are totaly incompetent and really bad scientists - but here they are also guilty because they didnt listen to patients community and experts. Their behaving is totaly unprofessional because if you want to do the best for the patients (and they are paying also from our taxes) then you dont hide the data, you try to cooperate and so on. They are completly guilty and there is no excuse for them. They have to pay for it. It´s still unbelieveble that we have to fight with such things in the 21st century!!!

I hear you. And I agree with you.

But I will reserve my judgment until we have PACE trial data or biomarker for ME/CFS. I'm advocate for innocent until proven otherwise so at the moment I don't want to declare them guilty. Of course I don't like their actions, it looks suspicious and more and I'm angry towards them.

But I'd like to look big picture, if there weren't White et. al. there would be someone Mr(s). Dark to do the dirty work for insurance industry. So as much as I'd like to see them punished from the harms they did, it doesn't change status quo and they system behind it. So this will happen again and again. Only at the times some who serve the system will get punished (to please public).

To stop this and make impact there need to be change to system, science publications, funding from special interests parties etc. This is what hurts those who we don't even know! And makes society just.