Discussion in 'General ME/CFS News' started by Sasha, Aug 16, 2016.
Huge win for patients, huge win for Alem Matthees!
Thank you, Mr Matthees.
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
@Valerie Eliot Smith - do you know how long QMUL have to make an appeal (on legal grounds only, now)?
Oh frabjous day! Thanks to all who fought so hard for this.
Some strong statements by the tribunal in the judgement!
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.
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.
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.
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.
I have just made myself a cup of coffee, and am settling down to read every word of the 48 page judgement. Bliss .
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"
If the "campaign of harassment" is really "an individual heckled Chalder at a seminar", I wonder what PACE's 22% recovered claim will turn out to be? #nullfield
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.
Time to end this madness.
Good work to all involved!
Shame on QMUL.
About Mr Matthees concern that QMUL restrict their sharing to friendly searchers team:
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.
You can also try a Google Site Search
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