Judge rules against QMUL on PACE trial scandal.

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The PACE trial is a scandal that has been rumbling on for years, but one that many of those in the UK, and particularly at QMUL, may have only heard one side of. A new judgement out this week has rejected QMUL's attempt to avoid releasing anonymised trial data, and also been critical of the way QMUL attempted to portray the trial's patient critics.

The director of Sense About Science USA greeted news of the Tribunal's decision by stating that the "PACE trial is a fault line between the way we did medicine (secretive, clubbable) and the way we should do medicine (transparent, shared)" and "PACE is turning out to be the science controversy of the decade: it indicts the medical ecosystem of review".

http://www.centreforwelfarereform.or...ial/00296.html

For those who'd prefer a podcast:
http://www.microbe.tv/twiv/twiv-397/

The response of QMUL to this scandal has been shameful. No-one within the university seems to feel that they have a responsibility to investigate patient's concerns properly. I think that this poses serious questions about the culture and values that guide the university, particularly in medicine.

A few months back I commented on this issue, and linked to a report that summarises many of the issues. It is now time for those at QMUL, including students, to start paying attention to what is happening at the university:
(Original post by #PACEtrial)
Hi there, I'm really concerned about the way in which some researchers at QMUL have been spinning their data, and then attempting to smear patients who are concerned about what they've done. The QMUL administration seems to have also been attempting to portray Freedom of Infomation requests as harassment.There was a report out last week which provides some details on this: http://www.centreforwelfarereform.or...f-recovery.pdfIs this something that others at QMUL are concerned about and trying to fight against, or is no-one really bothered?
(Original post by Queen Mary University of London)
Hi, thanks for getting in touch.Although I am aware of the PACE trial, I am not in a position to respond on behalf of the university. Personally, I do not know enough about the study to comment on it.Sorry to not be of more help.Barts love,Will
(Original post by #PACEtrial)
Thanks Will.Do you know if there are people at QMUL who are interested in looking at these sorts of abuses of power? To me it seems like those responsible are able to get away with avoiding justifying their actions, and that others at QMUL aren't really interested in looking at the details. Do you think that there is a cultural problem around ethical standards at QMUL?Also, I'd be interested to know how you're aware of the PACE trial, and if QMUL have been spinning things to students too.
(Original post by Queen Mary University of London)
Hi,My own experience of medical research at QMUL has been positive. Medical students at Barts are taught about ethical issues surrounding medical research throughout the duration of the course.As I have stated, it would be inappropriate for me to comment specifically on the issues surrounding the PACE trial as I have not had an opportunity to read up on it.Thanks,Will
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(Original post by Foo.mp3)
Seconded. Absolutely disgraceful, and the institution should be forthcoming with an apology, in press, without delay
Thanks. I agree.

Since I last posted data from the trial has been used to show that, when using the trial's protocol recovery criteria, the treatments developed by the trial's researchers failed to lead to any significant improvement in recovery rates:

https://www.statnews.com/2016/09/21/...me-pace-trial/

The Canary just featured a story on some of the politics surrounding the trial, and the attempt to secure the release of data:

http://www.thecanary.co/2016/10/02/r...data-released/

If there are any impassioned students at QMUL looking for a wrong to right, this seems a worthwhile area to campaign on.
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Peter White's response is shameful, and that he seems to think he can get away with it show just how low he (seemingly rightly) believes standards are at QMUL.

He says:

"The authors got their figures by tweaks such as increasing the pass-grade for what counted as recovery, and excluding patients who had reported themselves as “much better”."

But the re-analysis used the recovery criteria that he had published in the trial protocol! They did not 'tweak' it, they followed his guidelines. It was he who had refused to do this, making absurd adjustments to what was meant by 'recovery' and attempting to justify them with clear factual inaccuracies.

The patient who won access to the PACE trial data and helped conduct the re-analysis has addressed White's comments on pubmed, but White and his colleague continue to seem keen to avoid any real debate:

[excerpt from Matthees comments]:

"We used the recovery criteria as established by Prof. White and colleagues in the published PACE trial protocol. However, including those who rated themselves "much better" makes little difference to the number of participants classified as recovered when using the other protocol-specified recovery criteria, even when imputing the missing participant-rated CGI scores with doctor-rated scores, which tend to be more optimistic than the participant-rated scores: SMC, 5 to 6; APT, 3 (unchanged); CBT, 11 to 13; GET, 7 to 9. Our conclusion remains the same, no therapy group has a (statistically) significantly higher rate of recovery than for SMC alone, for either intention-to-treat or available-case. Almost all the participants who rated themselves "much better" failed to meet the remaining protocol-specified recovery criteria.

The comment from Prof. White does not address the major changes to other criteria. The revised "normal range" for fatigue and physical function overlaps with trial eligibility criteria for severe disabling fatigue, whereas previously there was a significant gap. Not meeting Oxford CFS criteria in the revised recovery criteria is not what it sounds: participants were counted as not meeting Oxford CFS criteria if they had a CFQ (bimodal) fatigue score of less than 6 or a SF-36 physical function score of more than 65, irrespective of whether they still met Oxford CFS criteria or not. Approximately half of those who 'no longer met Oxford CFS criteria' according to the revised recovery criteria still actually met Oxford CFS criteria. Feeling "much better" is not necessarily the same as recovered and can be a result of changes not relating to fatigue or physical function. None of the revised recovery criteria, alone or combined, convincingly reflect being recovered. Over one-third meeting all the revised recovery criteria still met Oxford CFS criteria."

https://www.ncbi.nlm.nih.gov/myncbi/...es.1/comments/
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A new peer-reviewed paper takes apart the spin recovery claims from the PACE trial piece by piece, concluding:

"The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments."

http://www.tandfonline.com/doi/abs/1...alCode=rftg20&

Some media coverage of this new paper is here:

http://undark.org/2016/12/19/british...ampaign=buffer

Still, it seems that the QUML administration is simply trusting and attempting to protect the researchers responsible for this trial, rahter than properly investigating their work and attempting to protect patients and students from misleading medical claims.
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Yesterday the PACE trial scandal was the main story on one of australia's major news websites:
http://www.news.com.au/technology/sc...62818a12c2e386


QMUL trying to ignore the problems with how they and their staff have behaved is only going to make them look worse in the long-run.
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This seems to be a somewhat limited discussion but you both appear to be enjoying it….
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(Original post by GrahamRodney)
This seems to be a somewhat limited discussion but you both appear to be enjoying it….
It's not a surprise that no-one is willing to engage in any sort of debate defending the PACE trial. It was always a clear case of junk science, and all it had on its side was the high cost/large size and the fact it was promoted by lots of people in positions of authority.

Maybe it's slightly disappointing that QMUL students seem to have little interest in an international scandal that is coming to shame their insitution, but one of my concerns was that QMUL seemed to be actively promoting a lazy thoughtlessness amongst their staff and students.

This is the sort of the mentality that concerns me:

(Original post by GrahamRodney)
(Original post by Queen Mary University of London)
(Original post by #PACEtrial)
Hi there, I'm really concerned about the way in which some researchers at QMUL have been spinning their data, and then attempting to smear patients who are concerned about what they've done. The QMUL administration seems to have also been attempting to portray Freedom of Infomation requests as harassment. There was a report out last week which provides some details on this: http://www.centreforwelfarereform.or...f-recovery.pdf Is this something that others at QMUL are concerned about and trying to fight against, or is no-one really bothered?
Hi, thanks for getting in touch. Although I am aware of the PACE trial, I am not in a position to respond on behalf of the university. Personally, I do not know enough about the study to comment on it. Sorry to not be of more help. Barts love, Will
Quite right, *Best to avoid these individuals if at all possible.
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(Original post by #PACEtrial)
It's not a surprise that no-one is willing to engage in any sort of debate defending the PACE trial. It was always a clear case of junk science, and all it had on its side was the high cost/large size and the fact it was promoted by lots of people in positions of authority.

Maybe it's slightly disappointing that QMUL students seem to have little interest in an international scandal that is coming to shame their insitution, but one of my concerns was that QMUL seemed to be actively promoting a lazy thoughtlessness amongst their staff and students.

This is the sort of the mentality that concerns me:
Well, it's just possible that they have other things to worry about. like exams, etc.
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(Original post by GrahamRodney)
Well, it's just possible that they have other things to worry about. like exams, etc.
In the five years since PACE was published, it's likely that everyone at QMUL will have had some other things to worry about. People will often have reasons for failing to stand up against abuses of power.

The behaviour of QMUL as an institution has still been shameful though, and it is somewhat disappointing that so few of those at the university have been willing to speak out about it. It does not reflect well on QMUL as a place of learning, and does reinforce my concerns about the values and standards held and promoted at QMUL.

As awareness of this scandal continues to spread internationally, I think that it will come to shape how QMUL is viewed more widely, and even those at QMUL concerned only by self-interest should want to put pressure on the QMUL administration to acknowldge and apologise for the problems with the way they have behaved.
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Now over one hundred experts and patient organisations have signed an open letter calling for the retraction of PACE's 2013 recovery paper.

http://www.centreforwelfarereform.or...on/00320.html#.

It's pretty unusual for so many academics to be willing to publicly call for a retraction like this.

The Medical Research Council has also just argued that it is QMUL's responsibility to investigate concerns about this work... something that QMUL how so far done quite appallingly.
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(Original post by #PACEtrial)
Now over one hundred experts and patient organisations have signed an open letter calling for the retraction of PACE's 2013 recovery paper.

http://www.centreforwelfarereform.or...on/00320.html#.

It's pretty unusual for so many academics to be willing to publicly call for a retraction like this.

The Medical Research Council has also just argued that it is QMUL's responsibility to investigate concerns about this work... something that QMUL how so far done quite appallingly.
Not a lot of interest in this now, I see.
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(Original post by GrahamRodney)
Not a lot of interest in this now, I see.
Compared to what?

There's been a range of coverage in the international media, eg the New York Times:
https://www.nytimes.com/2017/03/18/o...-syndrome.html

The UK media have been pretty quiet, but there was a brief description of the PACE scandal within a BBC investigation into the mistreatment of children with ME and I understand that, despite ongoing pressure from the UK medical Establishment to ignore this, more coverage is planned.
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Now the Journal of Health Psychology has a special issue on the PACE scandal. My understanding is that those associated with the trial and their allies are now trying to smear the journal and its editors, as well as patients. I'm not sure how they'll be able to argue that the editor of the Journal of Health Psychology is anti-psych, or refuses to see mental health problems as 'real', but they do still have plenty of powerful allies.

The special issue is here: http://journals.sagepub.com/toc/hpqa/current

For anyone interested in British academia, and how it can be corrupted, the PACE trial scandal is a fascinating story. For anyone considering studying at QMUL, it is worth being aware of the appalling role that they have played.
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I thought I should add a link to the JHP PACE special issue that will not go out of date when a new issue comes out:
http://journals.sagepub.com/toc/hpqa/22/9

Also, some bits and pieces in the UK press on academics swearing over the last week, eg:
https://inews.co.uk/essentials/news/...ecial-edition/

Of all the papers, seems it's the Daily Mail that had a go at covering the reasons for the dispute, although it's quite 'he-said, she-said', and simplifies matters in some misleading ways rather than digging into the details:
http://www.dailymail.co.uk/news/arti...s-war-M-E.html

QMUL continuing to behave badly. It seems quite possible that no-one at QMUL has a clue how to assess the quality of medical research. I think it could be that quacks have gained such positions of influence and authority that they're now able to define what is 'acceptable'. How much longer can this go on for? Surely student do not want to be 'educated' by people who have shown themselves to be incompetent.
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More coverage of growing awareness within the academic and medical community of the problems with research coming from QMUL from NPR: http://www.npr.org/sections/health-s...se-isnt-better

And Stat news: https://www.statnews.com/2017/09/25/...-syndrome-cdc/

QMUL is continuing to stick its head in the sand, evade debate, and pretend criticism is just a result of patients being unreasonable. The long this continues, the more humiliating it is going to be.
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I'd forgotten about this thread, but just had someone mention that they heard a staff member at QMUL complaining about it. Good to draw attention to those things others would like to brush under the rug.

There's been a steady drip of media coverage, although the UK Establishment is continuing to evade any real debate.

This article from Dr Duffy at the Huffington Post seems a decent summary of things:
http://www.huffingtonpost.co.uk/dr-s..._18375968.html
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This article on another CFS scandal briefly mentions the PACE trial, and might be of interest as an example of the sort of quackery that the flawed trail design used in PACE can lead to being promoted as 'evidence based medicine':
https://www.buzzfeed.com/tomchivers/...prX#.bfaqk6l1b
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And another new article with lots of critical stuff about PACE in the Independent:

http://www.independent.co.uk/news/lo...ml#commentsDiv

Meanwhile Nature has an article on the required 'reboot' for CFS researcher:
https://www.nature.com/articles/d41586-017-08965-0

It mentions criticism of PACE, but doesn't go into any detail on it.
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MP for Gaslgow North West and member of Parliament's Science and Technology Committee, Carol Monaghan, has secured a Westminster Hall debate on the problems surrounding the PACE trial. http://www.carol.monaghan.scot/2018/02/07/pace-trial/

As this scandal continues to grow QMUL have taken to arguing that they now cannot access data from the PACE trial, as everyone connected to it has now retired. Does this strik anyone else as slightly suspicious?
https://ico.org.uk/media/action-weve...fs50673373.pdf
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Hansard transcript of the PACE trial debate now available. Includes this contribution from Monaghan: "I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century."
https://hansard.parliament.uk/common...alPeopleWithME
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