Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

[AndyPR]

I think the dissenting opinion by one tribunal member was on a specific part of the case. There's something about it way earlier in the thread, if you can find it.

It was to do with the data itself, they believed that patients would be identifiable from each line of data and so were of the opinion that the data shouldn't be released on that basis alone. As I understand it they agreed with all other points though.

 

[NL93]

I was wondering if they might just retract the entire paper. Is that possible?
I can imagine they really don't want to release the data. Their own data will probably prove ones and for all that these interventions (CBT &GET) don't work , even for their "chronic fatigue" patients. That would be the end of their carreers.

Is it possible for them to still retract the entire thing? To protect pace participants' identities from vexatious ME activists of course..

 

[BurnA]

Surely they will release all the data immediately ? I mean, their only concern was patient confidentiality and now that that has been assured ( twice ) they should be only too happy to release the data - no ?

 

[BruceInOz]

It was to do with the data itself, they believed that patients would be identifiable from each line of data and so were of the opinion that the data shouldn't be released on that basis alone. As I understand it they agreed with all other points though.

The dissenting opinion was that "... the chance that a determined person with specialist skills could make the link, while less than probable, is more than remote". The majority said it was less than remote. A seemingly minor quibble on which the points of law turn!

 

[BruceInOz]

What is remarkable to me is the degree to which our mistrust of each other mirrors each other. Horton's characterisation of PACE critics as 'a fairly small, but highly organized, very vocal and very damaging group of individuals who have, I would say, actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients' is exactly how most of us would describe the BPS school. It reminds me of arguing with Creationists where you're each accusing each other of the same fallacies and only one of you is right but neither side is going to convince the other...

In your Creationist analogy, there is probably no scientific evidence, no matter how solid, that will sway the argument. I hope that is not the case here.

 

[trishrhymes]

Hello, my first post on PR. Thank you for letting me join. I'm so pleased the data should be released (fingers crossed). Can anyone tell me whether this means public release, so we can all see it and analyse it, or only release to the wonderful person who requested it and saw the case through?

 

[Wolfiness]

In your Creationist analogy, there is probably no scientific evidence, no matter how solid, that will sway the argument. I hope that is not the case here.

Well, this is something we're learning from the 20th century onwards, I think, that belief is about a lot more than just rational evidence, that it can be immune to facts, that facts can be slippery, and that far from the Whig view of rationality vanquishing belief they are two poles that are kind of constantly reasserting themselves against the other.

However, I'm very pleased that PACE has given everyone the opportunity to concentrate on the hard facts of whether anybody actually got better or not, outside of all the unwinnable academic mind games of "Oh but we never said it was purely psychological". PACE seems so awesomely, ridiculously, indistinguishably-from-parody badly conducted on every level and so bereft of value that it's a blessing in disguise to us because it's a bullsh1t beacon drawing in impartial people who can't be summarily dismissed the way the ME community has been all these years. And that's irrespective of what the reanalysis says because even on PACE's own terms its achievements are so weak and it seems more people are seeing that now and aren't prepared to let it go.

 

[Dolphin]

Hello, my first post on PR. Thank you for letting me join. I'm so pleased the data should be released (fingers crossed). Can anyone tell me whether this means public release, so we can all see it and analyse it, or only release to the wonderful person who requested it and saw the case through?

Perhaps it will only be released to the individual but he will have the right to share it publicly. I imagine in this case he will post it publicly.

 

[BruceInOz]

PACE seems so awesomely badly conducted on every level and so bereft of value that it's a blessing in disguise to us because of the way it's drawn in people who can't be summarily dismissed the way the ME community has been all these years. And that's irrespective of what the reanalysis says because even on PACE's own terms its achievements are very, very weak and it seems more people are seeing that now.

Yes! A year ago I was in the position where my specialist general physician wanted me to do GET since there was such good evidence for it. I knew I didn't want to but my brain would never work well enough to be able to explain my reasons in a rational way. So I began researching PACE for myself and decided the best way for me to keep the ideas in my head well enough so I could talk about it was to write my own critique of PACE which I eventually gave him a copy of. Since then so many wonderful critiques have come out that now I would have many articles I could have given him instead. However, now I think the best approach would be to hand him a copy of PACE's own long term follow-up paper and point out how badly the obvious null result has been spun in the hope that it would give him pause to consider that just maybe this crew has a track record of overspinning.

 

[Wolfiness]

Honestly, I try to avoid ME politics because they're so demoralising , and when I first properly looked into PACE in 2014, especially after the XMRV saga, I thought I must be misunderstanding it or you guys must be misunderstanding it because I just couldn't see how it passed peer review or how anyone could be taking PACE seriously if it was as bad as it seemed. And yet it seems it is. I'm still gutted that Ben Goldacre has kept quiet because his support would mean so much, but given what I presume is his loyalty to Prof. Wessely his defence of PACE is conspicuous by its absence too.

 

[PhoenixDown]

I can't wait to see what the media has to say about the subject, will we get an apology once the data is analysed? Will headlines such as "exercise and therapy cure me" be a thing of the past? Can't wait until the rituximab study to come out in 2018, ladies and gentleman the tide is finally turning and we're in for a hell of a ride.

Thanks to all those involved.

 

[alex3619]

Surely they will release all the data immediately ? I mean, their only concern was patient confidentiality and now that that has been assured ( twice ) they should be only to happy to release the data - no ?

No.

 

[Wolfiness]

I can't wait to see what the media has to say about the subject, will we get an apology once the data is analysed? Will headlines such as "exercise and therapy cure me" be a thing of the past?

But they shouldn't even have been a thing of the present if the "science" editors had acted like science editors and not PR agents. It's their job to scrutinise, ffs. There is so much complacency in so many areas that has allowed this travesty to flourish. I read a 6-month old piece in the Telegraph which might as well have reported that PACE cured us with blessings from unicorns for all its connection even with what PACE even claims for itself.

 

[alex3619]

But they shouldn't even have been a thing of the present if the "science" editors had acted like science editors and not PR agents. It's their job to scrutinise, ffs. There is so much complacency in so many areas that has allowed this travesty to flourish. I read a 6-month old piece in the Telegraph which might as well have reported that PACE cured us with blessings from unicorns for all its connection even with what PACE even claims for itself.

Investigative media is largely dead. Media companies are slashing budgets and staff, and giving them much less time to write stories. I have a blog on this here: http://forums.phoenixrising.me/index.php?entries/the-zombie-age-part-b.1334/

 

[Wolfiness]

I guess it's down to the public to make sure that news organizations know when they are unhappy with news coverage.

 

[SwanRonson]

I just couldn't see how it passed peer review

My belief in peer review is at an all time low. I subscribe to RetractionWatch RSS feed and it's depressing. Multiple retractions reported per day. Many are just flat out fraud. Almost all peer reviewed.

 

[TiredSam]

I guess it's down to the public to make sure that news organizations know when they are unhappy with news coverage.

Unfortunately it's partly the public's fault - we stopped paying for news, and now we're getting what we pay for.

 

[AndyPR]

An e-card has been set up to thank Alem, more details in this thread http://forums.phoenixrising.me/inde...em-matthees-by-me-cfs-lyme-assoc-of-wa.46313/

 

[Esther12]

Beginning to sink in that this is a great decision for us.

On my first read through, there were a few little niggles that distracted me from the bigger picture.

The dominant narrative around PACE and CFS patients in the UK was so far from reality that anything close to reasonable would have been a breakthrough. This ruling is something that is likely to be respected by the sort of lazy journalists who would have previously just trusted Wessely & co.

The Judge didn't just blindly trust authority, and that was really the only way QMUL could have won. Also, I think that this judgement means that if QMUL do appeal, the next judge is also less likely to just trust them. I really hope that they don't appeal, because it will drag this out even longer, but in some ways it could be good to have them bring down more attention on themselves.

I wonder if Wessely being RCP President til next Spring could play in their calculations? Any PACE scandal while he is such a public figure is more likely to get media attention. Maybe they'd like to delay things?

The release of PACE data would be likely to be such an embarrassment to so many people that I wonder if organisations like the MRC could change their regulations to try to make the release of the data harder?

I really hope the BBC documentary @charles shepherd mentioned is a fly on the wall thing intended to do the Science Media Center's dirty work that starts out with the film crew completely falling for the usual BS and being charmed by Wessely... then we get footage of their panic at this judgement, and then in the final half it becomes a serious journalistic investigation inspired by Tuller's work.

 

[Sean]

Unfortunately it's partly the public's fault - we stopped paying for news, and now we're getting what we pay for.

Yep. If you want quality investigative journalism, you have to pay for it.