Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

[Kati]

So basically their evidence (and, indeed their whole case) was about as shoddy and as exaggerated as their research. I'm not terribly surprised!

...and the will appeal because most certainly the jury was absolutely wrong about why their data should not be released. Of course we would hear the same arguments all over again, or different one but just as ridiculous...

Delaying can be a great tactic since they will have the opportunity to publish more papers and present to so many physicians from around the world about how vexatious the patients are and how us patients are so distrustful of their 'science'. But it will be one more opportunity for them to talk about the 'real' cause of CFS and the absolute 'treatments' that work.

Over the years (and I have not been at it as long as many of you out there) I have learnt and witnessed these tactics and there are many.

 

[AR68]

So, to make a long story short, under oath in front of a judge they were unable to produce any evidence of a campaign of harassment against them. Chalder was once heckled at a seminar. That's it. Will this change the British press narrative of ME patients as violent, extremist militants who make researchers feel less safe in the UK than in Afghanistan?

Maybe others think the same thing but I'd suggest that there is, on occasion, a certain amount of goading on the part of some prominent people in the 'CFS' field - a bit like trying to get someone sent off on a football pitch. If you tell someone enough that they are something that they patently know they're not and then brand them as 'militant' when they merely verbally disagree with you, some *may* snap. As it turned out, nobody did in this case.

The comments I heard in the tribunal incensed me. I thought they were inaccurate, snide and unprofessional. Yes, I did go home each night and swear about it - I was angry - but the people in that room knew perfectly damn well that there's a great difference between anger and being a "radical" or "extremist".

The patient community, with whom I myself have not always seen eye-to-eye with, conducted themselves in such a manner as to underline the "exaggerated" nature of the denigratory comments made in the tribunal. The smear stories stopped working. In front of a QC.

 

[AR68]

...and the will appeal because most certainly the jury was absolutely wrong about why their data should not be released. Of course we would hear the same arguments all over again, or different one but just as ridiculous...

Delaying can be a great tactic since they will have the opportunity to publish more papers and present to so many physicians from around the world about how vexatious the patients are and how us patients are so distrustful of their 'science'. But it will be one more opportunity for them to talk about the 'real' cause of CFS and the absolute 'treatments' that work.

Over the years (and I have not been at it as long as many of you out there) I have learnt and witnessed these tactics and there are many.

'Justice delayed is justice denied'.

 

[AR68]

May I also suggest that the sheer willingness to spend a quarter of a million on an appeal, QC etc and then to mention, in the tribunal, that the likes of PR and Twitter were monitored for comments could be seen as intimidatory?

 

[user9876]

So Cochrane has specific rules surrounding this. Cochrane review authors aren't allowed to extract data for the review from their own papers:



So I take this to mean that the PACE PIs would have had to give data over to the other review authors, which kind of doesn't fit with what Chalder was saying.

I think that fits with what Chalder is saying. Prior to the court case their story was they supplied data to independent researchers in Cochrane but it looks like they had to admit that Cochrane is not independent as they are involved in designing the review protocol.

Just to point out there are three Cochrane things.
1) The meta analysis of GET which was updated with PACE results and where Cochrane has defended the outcome switching that PACE did and given the trial a high mark in terms of integrity (not the right word).
2) An older CBT review
3) A review using individual patient data that includes the PACE data. So far only the protocol has been published. This includes White, Chalder and Sharpe and White even funded one of their protocol development meetings. This is what they were claiming is independent but actually isn't. Its done by the same person as was defending PACE in the GET review.

 

[adreno]

.and the will appeal because most certainly the jury was absolutely wrong about why their data should not be released.

The authors will definitely seek to appeal, as long as QMOL foots the bill. They have nothing to gain by not doing so.

 

[Daisymay]

The authors will definitely seek to appeal, as long as QMOL foots the bill. They have nothing to gain by not doing so.

Most likely, but can't they now only appeal on a legal issue, that some error occured in the legal process of the tribunal or some relevant law was ignored?

The tribunal judge and colleagues seems to have been so very much on the ball that that I'm hoping they were also totally on the ball with the legal side of things to be sure their case, which they'd spent months of work and effort on, was absolutely water tight.

Reading the decision document I'm so impressed with the way they saw through everything and how thoroughly they looked into it all. Thank you.

 

[user9876]

The authors will definitely seek to appeal, as long as QMOL foots the bill. They have nothing to gain by not doing so.

I think QMUL should have big issues with taking it further. The question is do they want to be known as an institution who spend millions defending a clinical trial where recovery criteria were below the entry criteria. As they appeal further into the legal system they will gain more and more attention especially with the current debates around open data. Whilst the press were just regurgitating their press releases they were fine but now the story is out and questions are being asked in the international press (if not the british press). QMUL will care about their international reputation. So at some point they need to look at the reputational damage associated with bringing a further appeal vs the embarrassment if the data is bad (I assume they have not asked this question as they don't want to know the answer). For Simon Gaskell this could be a lasting blot on his reputation as the person who put the weight of the institution he ran behind hiding clinical results from patients.

Even for White the arguments for appealing may not be strong. As things get noticed more people will realize that this behaviour is dodgy and question it. But then he does know what is in the data. I suspect the decision he is looking at is the damage of extra eyes vs his (and the SMCs) ability to rubbish any analysis produced by patients. In the past he has obviously been very confident that he can control the message if he was not he would never have published the recovery paper with the thresholds that he used. The additional factor for White is the internal politics within QMUL - what is his position like if he embarrasses the senior managers by getting them to spend more money.

 

[AR68]

Most likely, but can't they now only appeal on a legal issue, that some error occured in the legal process of the tribunal or some relevant law was ignored?

The tribunal judge and colleagues seems to have been so very much on the ball that that I'm hoping they were also totally on the ball with the legal side of things to be sure their case, which they'd spent months of work and effort on, was absolutely water tight.

Reading the decision document I'm so impressed with the way they saw through everything and how thoroughly they looked into it all. Thank you.

I don't think they'll appeal. Doesn't mean to say they won't but they are running out of avenues and are entering a cul-de-sac. They've spent a sackload of money for what? A Streisand Effect. What they may well do (and are beginning to do) is drag their heels like a naughty petulant schoolboy delaying the administration of the cane on his posterior.

I think there's more chance of delay, deviation, diversion etc. They've played dirty and I think they'll continue to do that. But the momentum is with everyone else.

 

[halcyon]

I think that fits with what Chalder is saying. Prior to the court case their story was they supplied data to independent researchers in Cochrane but it looks like they had to admit that Cochrane is not independent as they are involved in designing the review protocol.

Here's the relevant part:

He notes that in Professor Chalder's witness statement at para.67 PACE researchers have supplied "requested, anonymised data to independent scientists, as part of normal research collaboration". This Tribunal notes this suggests an acceptance on Professor Chalder's part that anonymization can be sufficiently carried out for disclosure purposes. Professor Chalder states that disclosure to the Cochrane review does not count as disclosure to independent scientists as all three of the PACE principal investigators sat on the review panel. However, if it was indeed independent it shows disclosure outside the bounds of the research group (and by extension this Tribunal assume beyond the consent form authority) but independent scrutiny to deal with the manifold criticisms of the process would be consistent with participants' broad expectations of the scientific 31 process. He highlights that disclosure was refused to bona tide respected independent researchers such as Professor Ron Davies of Stanford University on the grounds that he was critical of the trial.

She seems to be implying that the data was released to themselves, not to the other "independent" review authors on the panel. If the other review authors weren't allowed to analyze the data, then they broke Cochrane rules.

 

[GreyOwl]

Here's the relevant part:
She seems to be implying that the data was released to themselves, not to the other "independent" review authors on the panel. If the other review authors weren't allowed to analyze the data, then they broke Cochrane rules.

And no-one noticed?

 

[JamBob]

This is such great news. Thanks to Alem and all the experts who have supported this case.

Maybe we need to get more lawyers involved in future. It seems like the medical community, researchers, journalists and skeptics have been easily taken in by the anti-patient spin over the years whereas the legal professionals seem to have attained a more incisive grasp of the issues in a short space of time.

 

[ukxmrv]

This is such great news. Thanks to Alem and all the experts who have supported this case.

Maybe we need to get more lawyers involved in future. It seems like the medical community, researchers, journalists and skeptics have been easily taken in by the anti-patient spin over the years whereas the legal professionals seem to have attained a more incisive grasp of the issues in a short space of time.

I'm not sure about other countries Jambob but in the UK patients have been trying to get lawyers involved for many years. I don't know if you were involved with the Judicial Review into the NICE Guidelines but that was an example of when it went badly wrong for patients.

So many angles have been tried with lawyers from individual cases of mistreatment to human rights. The problem has been the lawyers rarely want to get involved on behalf of patients.

 

[Snowdrop]

DagensMedicin has published some really ugly and untrue stuff in articles about ME/CFS and pwme over the years, with a very obvious BPS bias, and they have very often allowed many long horrendous and abusive discussions between "professionals" in the comments sections etc...

Sounds like they are cutting themselves loose and distancing themselves from the PACE evidence but in a gentle way where they don't encourage further damage to something they want to hold dear.

May I also suggest that the sheer willingness to spend a quarter of a million on an appeal, QC etc and then to mention, in the tribunal, that the likes of PR and Twitter were monitored for comments could be seen as intimidatory?

The BPS crowd have maintained that (irrespective of what the etiology might be) they take ME to be a serious illness.
Well, we are seriously ill and PR is our safe place. And yet they troll through posts looking to smear us. All they do is set a new low in behaving unprofessionally.

 

[Skippa]

What are the odds that "whilst attempting to convert and anonymise this extremely complicated dataset, we have irreversibly corrupted the files and thus rendered the data irretrievable".

 

[user9876]

What are the odds that "whilst attempting to convert and anonymise this extremely complicated dataset, we have irreversibly corrupted the files and thus rendered the data irretrievable".

It would be very unprofessional of them not to have an offsite backup.

But then they have also shared the data with Cochrane and Kings (Chalder) had the full data set.

 

[Marky90]

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

 

[alex3619]

Professor Chalder states that disclosure to the Cochrane review does not count as disclosure to independent scientists as all three of the PACE principal investigators sat on the review panel.

By my reading this simply means that there was not proper independence, not that they did not have the data.

 

[alex3619]

What are the odds that "whilst attempting to convert and anonymise this extremely complicated dataset, we have irreversibly corrupted the files and thus rendered the data irretrievable".

Sing with me .... "retract, retract, retraaaaact ... " (Think Recall, recall, recall, from Total Recall.)

 

[PennyIA]

Is anyone else watching this thread... not that there have been very many 'updates'... but because every time there's a new post in here - it brings back some of the excitement and happiness that was the result of the ruling?

I can only help that they delay, but then disclose and then fight as they will, truly independent analysis will still happen and decisioners will take it for what it's worth to decide what recommendations for patients are still applicable.