Scandal at Queen Mary's University London - UK Establishment

this is sincerely too long to read anyone can summarise?

It's useful for the insurance industry & government to be able to claim disabled people can recover, if only they will rehabilitate themselves. The UK government funded poorly designed research from researchers with insurance industry COIs that claimed to find Cognitive Behavoural Therapy and Exercise Therapy allowed mnay patients with ME.CFS to recover (figures given varied from 40%-22%).

However, even ignoring the problems with trial design, they had spun their data. A patient fought a long legal campaign (which the researchers attempted to present as a form of harassment) to force the release of trial data. He won the case, and the data revealed that treatment did with CBT/exercise did not lead to a significantly greater chance of recovery (according to the QMUL researcher's pre-specified recovery criteria) than a control group that had no additional treatment.

This is one of those stories where the more you read into the details, the more interesting it becomes. The way in which the researchers spun their results, and then ran a campaign attacking patients for attacking their work, is worrying. Even now that lots of US researchers are criticising them, they still might get away with it as UK academia is so founded on personal networks.

The Undark article above is a short one.

This is another lengthy piece I'm afraid: http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html

That last piece has a quote from Trevor Butterworth, direcotr of Sense About Science USA:

"PACE is turning out to be the science controversy of the decade: it indicts the medical ecosystem of review"

this is the biggest scandal since the bogdanoff affair

The political aspect makes it a really odd science scandal. Also the way patients were smeared for raising concerns, and then the UK science establishment tried to close down debate (even listing 'debate' as an example of harassment) is all pretty amazing. Gay rights campaigner Peter Tatchell tweeted:

"Attempt to stigmatise ME/CFS #PACEtrial campaigners reminds me of when I protested aversion therapy for LGBTs" https://twitter.com/petertatchell/status/772035205695672320

Please take your fake disease to >>>/x/

Even if you happen to think QMUL what were treating is a 'fake disease', that doesn't prevent there being problems with the methodolgy of their work, or their spinning of results.

Recent reports from places like the Institute of Medicine have argued that this is a serious disease that has often been poorly treated, but even if that were not the case it would make PACE no less of a scandal.

>>8712508
The only one spinning is you, because the study didn't conform to your wacko beliefs. The same exact thing happens with the small but insane group of Lyme disease people. There is no conspiracy by the "mainstream" to hush up your disease. There is no "scandal" and the methodology of the study is nothing out of the ordinary for clinical research. Your sources are biased contrarian garbage and are lying to you.

>>8712528
You seem to be making some bold assumptions about my beliefs. Is that comforting for you?

Do you recognise that the trial's researchers refuses to release results for the recovery criteria that they themselves had chosen? Do you recognise that, when forced to release trial data by a court, it showed that there was no difference in recovery rates between those who had recieved their treatments and those who had not?

I have checked the details for myself. What, specifically, are you claiming is a lie?

It is quite clear that, for example, the trial had originally required patients to have an SF36-PF score of 85 or over before they could be classed as recovered. Then they decided to lower this criteria for recovery to include patients with a score of just 60, even though patients could start the trial with a score of 65 and be classed as suffering from severe and disabling fatigue. In their paper they tried to justify this change by claiming that "approximately half the general working age population would fall outside the normal range", yet the population data they cited actually showed that less than 18% of the general working age population had a score under 85.

That's just one example. The Wilshire paper summarises more (although it is not currently open access): http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20

You can read the attempt at a response from the trial's reearchers here: http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1288629

Do you feel able to discuss the details, or do you just want to chuck empty insults around?

>>8712551
Yes, I'm making assumptions that are probably true given the polarizing nature of CFS.

I recognize that many science deniers use FOIA requests as a means to bully scientists they don't like.

>Do you recognise that, when forced to release trial data by a court, it showed that there was no difference in recovery rates between those who had recieved their treatments and those who had not?
No, that's false. It depends on the definition of recovery. If your definition is too strict then you will not learn anything. The original definition of recovery was too strict and was changed before the data was compiled.

>In their paper they tried to justify this change by claiming that "approximately half the general working age population would fall outside the normal range", yet the population data they cited actually showed that less than 18% of the general working age population had a score under 85.
The use of the Bowling study was acknowledged as a flaw in the paper by the authors. This doesn't affect the conclusion. Where's the scandal? Where's the conspiracy?

>>8711988
>The UK media has been silent on all this though
Thats because its not in plain English and requires a brain cell or two to understand whats going on.

>"Waaaaah, calling out legitimately dishonest research practices is HARASSMENT!!!"

This is why nobody takes psychology and psychiatry seriously as scientific endeavors.

>>8712611

>Yes, I'm making assumptions that are probably true given the polarizing nature of CFS.

That's an interesting way of thinking.

>No, that's false. It depends on the definition of recovery. If your definition is too strict then you will not learn anything. The original definition of recovery was too strict and was changed before the data was compiled.

So it's true for the recovery criteria that the trial's researchers had themselves chosen in their own protocol?

If you want to argue that this criteria was too strict, and that this is why there was no difference between groups, then please do so, but it will need you to engage with the spcifics of the criteria and the changes made. I think that you will have difficulty here.

As for the claim that the criteria was changed before the data was compiled, what evidence do you have to support that? Even after they had published some results, QMUL calimed in response to an FOI request that they were planning to release results for the protocol recovery critieria in a peer reviewed paper. They have so fare refused to clarify when they decided against releasing results for this pre-specified outcome, or whether that had approval from the Trial Steering Commitee for this protocol deviation. They've only said that they chose their new critieria before they conducted their analysis.

Will need a second post to explain where you've gone wrong on the use of the Bowling data.

>>8712611

>The use of the Bowling study was acknowledged as a flaw in the paper by the authors. This doesn't affect the conclusion. Where's the scandal? Where's the conspiracy?

In their 2011 paper they claimed they'd used working-age data from Bowling to justify an SF36-PF of 60 as an appropriate cut-off for their 'normal range'. They then used normal ranges for their two primary outcomes to class patients as "back to normal", even though patients could report a decline on both primary outcomes from baseline and yet go on to be described as "back to normal". The researchers have acknowledged that they had not used data for a working age population, but data that included all those aged over 65 (25% of the population), but they have not corrected their analysis with the working-age data, which would have required a cut-off of 75. A cut-off of 60 was then used again in their 2013 'recovery' paper, even though PACE trial participants tended to be younger than even the working-age only population.

In their 2013 recovery paper they tried to justify reducing their SF36-PF cut-off from 85 to 60 with this:"We changed our original protocol’s threshold score for being within a normal range on this measure from a score of 85 to a lower score as that threshold would mean that approximately half the general working age population would fall outside the normal range."

In fact, the data cited showed that the median score for the working age population was 100, less than 18% of the general working age population had a score under 85. Also, the trial's protocol makes it clear that threshold for recovery (85 or over) was intended to be more demanding than the mean -1sd normal range, reporting that: “A score of 70 is about one standard deviation below the mean... for the UK adult population”.

They have not acknowledged or corrected these problems with the 2013 paper. Their recent response to a critical paper just ignores it, seemingly hoping others will too.

File: 2016-04-19-1461058207-9224976-DisabilityPACESManipulationII01-thumb.jpg (84KB, 570x411px) Image search: [Google]

84KB, 570x411px

>>8713057

>This is why nobody takes psychology and psychiatry seriously as scientific endeavors.

This article put PACE in the context of the current 'replication crisis'.

http://www.news.com.au/technology/science/human-body/how-alem-matthees-letter-helped-solve-chronic-fatigue-syndrome-mystery/news-story/eb566e1a0f6bcaadb362818a12c2e386

While there do seem to be some particular problems with the standards found in psych research, it really seems like UK science in general (or at least medical research) is very based on networks, and that people are resisting having this large and expensive project debunked. When so many important peoples' reputations will be harmed by this scandal, few have an incentive to speak out. It's been interesting contrasting the criticism coming from US academic with the relative silence from UK professors (other than some from Keith Laws, and a lot from Jonathan Edwards, who is now safely emeritus).

>>8713003

>Thats because its not in plain English and requires a brain cell or two to understand whats going on.

It's a bit complicated in places, but there are lots of simple and easy to understand problems too. I've attached a graph illustrating the clear problems with their use of the SF36-PF scale.

Although not that high, I think that my expectations of the media may be unrealistic.

New paper slagging off the PACE trial is out today in the Journal of Health Psychology. By an American Prof, again.

http://journals.sagepub.com/doi/abs/10.1177/1359105317695801?journalCode=hpqa

I also remembered something else 4chan might find funny, a letter refusing another American professor's request for trial data. They tried to justify keeping their data secret by writing that there is “active campaign to discredit the project has caused distress to the university’s researchers who hold legitimate concerns that they will be subject to public criticism and reputational damage.” Poor them.

The letter is here: https://dl.dropboxusercontent.com/u/23608059/PACE%20F325-15%20-%20Prof.%20James%20Coyne%20-%20Response-2.pdf

A patient group provided some context here: http://www.meaction.net/2015/12/12/vexatious-kings-college-london-dismisses-james-coynes-request-for-plos-one-pace-data/