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Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

Messages
15,786
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 :p
 
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A.B.

Senior Member
Messages
3,780
It's an interesting read. The tribunal members were not impressed by claims about risk of identification or the claim that criticism of the trial and FOI requests were due to a campaign with malicious intent. The words "wild speculations" were used at some point.
 

user9876

Senior Member
Messages
4,556
QMUL spend 200k on lawyers for this court case and they still couldn't win or provide a convincing argument.

I think they have limited grounds for appeal but they clearly are willing to spend vast amounts of public money on keeping the data private. I wonder if the head of QMUL will issue a statement as to why he thinks it is necessary to spend such amounts of money on this and what checks he has made into the claims of White prior to authorizing the expenditure.
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Assuming QMUL doesn't appeal (or its appeal fails) the data then released should allow analysis to see how many people recovered according the the original protocol (ie before the authors moved the goalposts). It's highly unlikely to be anywhere near the 22% claimed by PACE (a figure approvingly repeated in the UK's House of Lords) and should give patients a more accurate estimate of the curative power of CBT and GET.

The State (and taxpayers) ultimately fund clinical research for the benefit of patients, so it's important patients get accurate, reliable information on the effectiveness of any tested treatments. And researchers should not, in my view, go to such lengths to hide their data from scrutiny: it might be in their interests, it's not in the interests of patients.
 
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Richard7

Senior Member
Messages
772
Location
Australia
I think the best bit may be the bottom of page 36 and top of 37 where they state

... "Professor Chalder's evidence when she accepts that unpleasant things have been said to and about PACE researchers only, but that no threats have been made to researchers or participants. The highest she could put it was that some participants stated that they had been made to feel "uncomfortable" as a result of their contact with and treatment from her, not because of their participation in the trial per se. "

Now if only the journalists convinced that we pose a threat to researchers could read this, and remember it next time the story comes around.
 

Stewart

Senior Member
Messages
291
I think the best bit may be the bottom of page 36 and top of 37 where they state

... "Professor Chalder's evidence when she accepts that unpleasant things have been said to and about PACE researchers only, but that no threats have been made to researchers or participants. The highest she could put it was that some participants stated that they had been made to feel "uncomfortable" as a result of their contact with and treatment from her, not because of their participation in the trial per se. "

Now if only the journalists convinced that we pose a threat to researchers could read this, and remember it next time the story comes around.

Don't forget section (iv) of the majority decision (on page 40). "It was clear that (Professor Anderson's) assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder."

It's now on record that when the PACE lobby were asked to produce evidence of a campaign of harassment, the best they could manage was an isolated incident of heckling. This decision should be *very* helpful the next time anyone needs to rebut the SMC's wild claims about "ME militants"
 

Cheshire

Senior Member
Messages
1,129
It's now on record that when the PACE lobby were asked to produce evidence of a campaign of harassment, the best they could manage was an isolated incident of heckling. This decision should be *very* helpful the next time anyone needs to rebut the SMC's wild claims about "ME militants"

Tribunal p25 said:
A number of press articles are included in which allegations of harassment are extensively detailed, but the excerpts from Phoenix Rising and the comments on the articles do not evidence this harassment.
 

Richard7

Senior Member
Messages
772
Location
Australia
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.
 

Cheshire

Senior Member
Messages
1,129
About Mr Matthees concern that QMUL restrict their sharing to friendly searchers team:

The evidence before us is not clear but if QMUL are cherry-picking who analyses their data from within the recognised scientific research sphere to only sympathetic researchers, there could be legitimate concerns that they wish to suppress criticism and proper scrutiny of their trial.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I think it likely they will try to appeal, but given the history its probably only a matter of time, even if the appeal is allowed to go ahead, before they have to release the data.

As for evidence that the treatments do not work, there have been three large government reviews, in Belgium and Holland, and they found patients are no better off with CBT/GET.