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PACE trial: QMUL appeal information re hearing on 20 - 22 April (UK)

Messages
724
Location
Yorkshire, England
Aargh... so tense... 3-4 weeks.... might die...
This is quite a bad time to let you know that whatever the decision, further appeals to the higher tribunal and then the Court of Appeals are theoretically possible. :(

I'm afraid we'll know the arguments for both sides, but it is possible for this process to go on for a few years.

The FOI saga I mentioned earlier in this thread started in 2012 and has been appealed up to the Court of Appeal with the latest/last hearing being scheduled for 13/14 June this year.
 
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13,774
I think that QMUL's position is becoming ever harder for them to publicly justify. I'm not sure that they would appeal, especially if the judgement provides me public information on their arguments (which always seem amazingly weak and manipulative whenever we get a hint of them).

I think that there has been a recent waking up to the problems with PACE, even though it's a very gradual process in the UK. If the tribunal had been in three months time I'd have felt more confident about us winning.
 

Invisible Woman

Senior Member
Messages
1,267
I think that the problem is the PACE investigators they have painted themselves into a corner & now have nowhere to go and nothing really to lose. QMUL has probably received a lot of grant funding and prestige by being associated with this crowd.

They need a way out where they don't lose face. I don't think there is one. Hence I think they will hang on for as long as they can.
 
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13,774
I think that the problem is the PACE investigators they have painted themselves into a corner & now have nowhere to go and nothing really to lose. QMUL has probably received a lot of grant funding and prestige by being associated with this crowd.

They need a way out where they don't lose face. I don't think there is one. Hence I think they will hang on for as long as they can.

Yeah... but QMUL have their own interests. The PACE researchers will want to go on appealing forever. I think QMUL's senior admin would be less keen. Especially if it looks like public interest is going to keep growing during the appeal process. Does QMUL really want to justify spending even more money fighting against the release of data from a trial that is becoming increasingly widely known as an example of the problems within medical research?

If the ICO decision had only been made this month, I think QMUL would have been much less likely to appeal. They are in deeper now that they were though, so maybe they'll decide to keep plugging on and hope for the best.

The lack of news about the tribunal seems a bit worrying to me. I'd have thought we'd have heard something by now. Hope they didn't decide we're all so dangerous that QMUL's arguments need to be protected behind closed doors.

Actually - the way QMUL have been trying to smear patients does mean that the data release will look pretty terrible for them. Maybe they will go on appealing.
 

Kati

Patient in training
Messages
5,497
Yeah... but QMUL have their own interests. The PACE researchers will want to go on appealing forever. I think QMUL's senior admin would be less keen. Especially if it looks like public interest is going to keep growing during the appeal process. Does QMUL really want to justify spending even more money fighting against the release of data from a trial that is becoming increasingly widely known as an example of the problems within medical research?

If the ICO decision had only been made this month, I think QMUL would have been much less likely to appeal. They are in deeper now that they were though, so maybe they'll decide to keep plugging on and hope for the best.

The lack of news about the tribunal seems a bit worrying to me. I'd have thought we'd have heard something by now. Hope they didn't decide we're all so dangerous that QMUL's arguments need to be protected behind closed doors.

Actually - the way QMUL have been trying to smear patients does mean that the data release will look pretty terrible for them. Maybe they will go on appealing.
Dr @charles shepherd was to attend today. Maybe we will hear something, maybe we won't. What matters most though is the judge's response.
 
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13,774
We are currently seeking further ethical and scientific advice, as well as the advice of patients, on how best to provide independent decisions about appropriate access to relevant data in a way that balances the rights of trial participants, and future progress of the trial analysis and follow up, with the public interest in releasing trial data.

http://www.kcl.ac.uk/ioppn/news/records/2015/december/release-of-data-from-the-PACE-trial.aspx

Have we ever got any follow up from them on this? How exactly did they seek the advice of patients? What did these patients advise them? It always seemed like BS, but now that so many patient groups have publicly called for the release of this information, I wonder what the PACE researcher's claim about patient's views is?
 

Sean

Senior Member
Messages
7,378
This is quite a bad time to let you know that whatever the decision, further appeals to the higher tribunal and then the Court of Appeals are theoretically possible. :(
True, but not on the facts of the case, only on points of law or procedural grounds, as I understand it.

Which means that whatever ruling this hearing makes, them's the facts, legally speaking.
 
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13,774
Feeling unusually nervous. If they rule against the data being released, I think we're going to be in for a really long slog getting the PACE claims corrected and moving forward with CFS research. Would quite like to be able to stop reading more and more stuff about PACE soon... without release I can see myself getting sucked even deeper in though.
 

Large Donner

Senior Member
Messages
866
We are currently seeking further ethical and scientific advice, as well as the advice of patients, on how best to provide independent decisions............

This may well be a slippery way of puppeting patients who took part in PACE, using fear of their information being leaked, into giving QMUL and angle to argue they cant possibly release any data because the participants/"patients" themselves are totally against it.
 
Messages
2,087
Feeling unusually nervous. If they rule against the data being released, I think we're going to be in for a really long slog getting the PACE claims corrected and moving forward with CFS research. Would quite like to be able to stop reading more and more stuff about PACE soon... without release I can see myself getting sucked even deeper in though.

I dont think its as bad as that. Remember Tuller and Goldins work is enough of an analysis to render PACE useless, with or without data release.
It is still technically possible that data release would support the PACE findings, but of course that doesn't undo all the flaws.
 

Chrisb

Senior Member
Messages
1,051
I agree that even if release of data were not ordered, there would still be plenty to go at. PACE does not include the severely affected and apparently shows CBT/GET to be ineffective in others. There are interesting calculations somewhere, I think by by Anciendaze, which showed how unrepresentative the sample included in the trial was.

If those figures are combined with risk of harm for some sufferers from exercise, it should be possible to construct a case to show that it would be unethical to impose CBT/GET without first undertaking studies to distinguish between those who might benefit and those who would be harmed. It may be the insurance companies that will have the last, as well as the first word, on this matter.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
And a wonderfully ironic campaign that grew out of this and other protests is the 'Keep Volunteering Voluntary', where charities sign a pledge "As charities and voluntary organisations we know the value of volunteering. Volunteering means people independently choosing to give their time freely to help others and make the world a better place. Workfare schemes force unemployed people to carry out unpaid work or face benefit sanctions that can cause hardship and destitution. We believe in keeping volunteering voluntary and will not participate in government workfare schemes.”
The equivalent to that in our case would be for a campaign to grow up among psychologists called "Keep Psychology Psychological" , where campaign members sign a pledge "As psychologists we know the value of psychological treatment . Psychological treatment means treating patients with psychological problems to make them better. The BPS movement, Insurance companies and DWP are using CBT and GET to force physically ill people to carry out inappropriate or harmful exercise or face benefit sanctions that can cause hardship and destitution. We believe in keeping psychology psychological and will not participate in government cost-cutting schemes.”

Pardon me for letting my imagination run away with me. I know it is not fair to tar all psychologists with the same brush, but it has always disappointed me that those psychologists with an ounce of integrity stand by and do nothing, when they should be protesting about how their profession is being used and raise a finger to put their house in order.
 

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
The equivalent to that in our case would be for a campaign to grow up among psychologists called "Keep Psychology Psychological" , where campaign members sign a pledge "As psychologists we know the value of psychological treatment . Psychological treatment means treating patients with psychological problems to make them better. The BPS movement, Insurance companies and DWP are using CBT and GET to force physically ill people to carry out inappropriate or harmful exercise or face benefit sanctions that can cause hardship and destitution. We believe in keeping psychology psychological and will not participate in government cost-cutting schemes.”

Pardon me for letting my imagination run away with me. I know it is not fair to tar all psychologists with the same brush, but it has always disappointed me that those psychologists with an ounce of integrity stand by and do nothing, when they should be protesting about how their profession is being used and raise a finger to put their house in order.

THAT is a brilliant idea! I would be totally behind something like that... Something to think about!
 

charles shepherd

Senior Member
Messages
2,239
I read somewhere (Valerie Eliot Smith's blog?) that it could take 3-4 weeks.

Any news, @charles shepherd?

David Tuller and I were there yesterday to observe proceedings - which mainly consisted of going through a QMUL witness statement from an expert in data protection in considerable detail. This part of the proceedings covered some quite complex IT issues relating to whether the PACE trial data could be properly anonymised.

David was there all day - I had to leave for a couple of hours to attend an important meeting a Maximus HQ relating to DWP benefits

We were not allowed to take detailed notes or verbatim transcripts of what was said and there were strict instructions as to how the proceedings could be reported - along with a warning that anyone who did not follow what the judge had said could be open to contempt of court proceedings

So I am not going to produce a report at this stage and I suspect that the same will probably apply to anyone else who was there

A close watch is being kept on social media reporting and a twitter conversation was actually referred to at the hearing yesterday…

The hearing closed today (I am not attending but I think David is) and it looks as though they are aiming to announce a decision at some point in the next two weeks or so
 

Kati

Patient in training
Messages
5,497
David Tuller and I were there yesterday to observe proceedings - which mainly consisted of going through a QMUL witness statement from an expert in data protection in considerable detail. This part of the proceedings covered some quite complex IT issues relating to whether the PACE trial data could be properly anonymised.

David was there all day - I had to leave for a couple of hours to attend an important meeting a Maximus HQ relating to DWP benefits

We were not allowed to take detailed notes or verbatim transcripts of what was said and there were strict instructions as to how the proceedings could be reported - along with a warning that anyone who did not follow what the judge had said could be open to contempt of court proceedings

So I am not going to produce a report at this stage and I suspect that the same will probably apply to anyone else who was there

A close watch is being kept on social media reporting and a twitter conversation was actually referred to at the hearing yesterday…

The hearing closed today (I am not attending but I think David is) and it looks as though they are aiming to announce a decision at some point in the next two weeks or so
@charles shepherd Thank you so much for reporting what you can report. Fingers (and all appendages) crossed.
 
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Large Donner

Senior Member
Messages
866
David Tuller and I were there yesterday to observe proceedings - which mainly consisted of going through a QMUL witness statement from an expert in data protection in considerable detail. This part of the proceedings covered some quite complex IT issues relating to whether the PACE trial data could be properly anonymised.

It seems to me that the judge will take this "expert witness statement" as factual unless the opposing side has brought forward an opposing expert. Which, from what we have heard so far, is unlikely.

Is the person who made the FOI request being represented in any way? If not then my opinion is the chances of winning are severely reduced.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
It seems to me that the judge will take this "expert witness statement" as factual unless the opposing side has brought forward an opposing expert. Which, from what we have heard so far, is unlikely.

Some "opposing" evidence: similar data was released for the sister study, the FINE study -which had an agreement on protecting patent privacy as strictly, or perhaps more so than the PACE study. Eg. they've already done it before (with no consequence), so why not now?

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