Nick Brown (good science star): My (current) position on the PACE trial

[Sasha]

Just to put things into wider context.

I agree there's a wider context but on this issue of getting the PACE data released, it's not about personalities but scientific practices. We don't need to convince neutral scientists about anything to do with the PACE authors' motives or personalities - we just need them to recognise that bad scientific practices are occurring and to get them to support PLOS One with its data-sharing policy.

 

[sTeamTraen]

I'm a bit confused by your reference to a "bureaucracy" in regards to PACE. My assumption is that the principal authors have been making the decisions and don't answer to anyone else. Who do you regard as the bureaucracy in this case?

The bureaucracy I see here is King's College. Whoever "owns" the data, it's very likely not the named researchers; it will be an institution. Before someone at level 5 of that institution's hierarchy can hand over that data, they need to know that there will be no comeback from levels 4, 3, 2, or 1. This can be as simple as knowing the Vice-Chancellor of King's had a discussion with the Vice-Chancellor of QMUL during which they agreed that the best policy was to tough it out, because they already got a bloody nose off the Information Commissioner last year over some other matter and these things count towards one's chances of a peerage. Note: I just made that up; I have no reason to believe that anything like that happened, but from the point of view of the person at level 5, it might as well be the case.

I used to be a bureaucrat. I signed off on stuff I didn't like. Everyone in a bureaucracy does. It's part of the deal. When people's consciences finally clash too hard with their loyalty to the organisation, you get leaks or whistleblowing, but even anonymous leaks are very dangerous, career-wise. The general motto is, "This, too, shall pass". Again, per my previous post, if every civil servant questioned every ministerial decision, nothing would ever happen, so the existence of this way of working is not, in itself, a bad thing; it's just that sometimes, it leads to bad things that have a real impact on people's lives. With luck, sometimes, a workaround can be found; but this is rarely obtained by a frontal assault, because the front door is always well defended.

Bit confused again. If the vote was 8 to 1 in favour of releasing the data, isn't it the 1 who has broken ranks and is rebelling? I take your point about what happens to whistleblowers but I don't understand why the majority wouldn't rule here.

First, just in case it wasn't clear: the existence of a vote among the researchers, and the current state of that vote, are both entirely hypothetical. And as I noted above, even if all 9 researchers wanted to release the data, they might not be able to swing it. But in any case, the dynamics of these situations are not about democracy and majority voting. They are about collective loyalty to the group(s) of which one is a member, which is an incredibly strong human instinct.

In this case, the group is the team that put together the data, and at some point said no to the first request for the data. From that point on, it becomes very hard for anyone to change their mind; and even if they do change their mind, they will know how hard it was, and will respect the difficulty that the others will be having. It is basically inconceivable that these nine people (again, to the extent that it's even their decision), having refused the data to Jim Coyne and others, will suddenly say "Oh, you know what, actually, here it is after all". Why? Because it would mean admitting that all of the cogently-argued (in their view) reasons in the rejection letter were all, to use a technical term, bollocks.

These are smart people. That believe that what they do, most days when they get to work, is rational. Their design decisions in the trial were rational, and the rejection letter they stood behind was rational. To admit that you have been fooling yourself is a very, very hard thing for people to do, especially for the smart, rational people who become research scientists or university administrators.

So for anything to change in their position, something has to change outside the current system. One example might be if the Science Minister, say, stepped in. (I don't have his number, unfortunately.) At that point, the researchers might say, well, he's taken responsibility, so it's no skin off our nose; they get to continue to believe that their refusal was rational, but he's given them a way out. They can go and have a pint and feel glad this is all over.

 

[user9876]

The bureaucracy I see here is King's College. Whoever "owns" the data, it's very likely not the named researchers; it will be an institution. Before someone at level 5 of that institution's hierarchy can hand over that data, they need to know that there will be no comeback from levels 4, 3, 2, or 1. This can be as simple as knowing the Vice-Chancellor of King's had a discussion with the Vice-Chancellor of QMUL during which they agreed that the best policy was to tough it out, because they already got a bloody nose off the Information Commissioner last year over some other matter and these things count towards one's chances of a peerage. Note: I just made that up; I have no reason to believe that anything like that happened, but from the point of view of the person at level 5, it might as well be the case.

I used to be a bureaucrat. I signed off on stuff I didn't like. Everyone in a bureaucracy does. It's part of the deal. When people's consciences finally clash too hard with their loyalty to the organisation, you get leaks or whistleblowing, but even anonymous leaks are very dangerous, career-wise

I wouldn't see organizations in that way. I work in a very large (US) company and I would see it differently things have to get pretty big to get above the level of a business head unless it involves talking with large customers. However, if there are problems I think many staff would raise things as ethical issues and the organization encourages this via an open door policy and an ethics office. The reason is the company is very protective of its brand and also concerned about regulatory compliance. There is a difference between things people are uncomfortable with (which get moaned about) and things that are unethical (which I think is very very rare).

Of course I don't know much about the administration of universities so they may be very different. I suspect in the UK they are quite hierarchical. From other things I've got the impression that each department/senior academic gets quite a lot of freedom and independence. From when I was a student I remember them as being very political which just made the idea of industrial research much more fun.

 

[beaker]

I actually have some sympathy with the researchers here. They thought they were doing science, and now they also have to cope with the socio-political fallout. Most of them didn't sign up for this. They are hiding behind the administrators, but I promise you that most of them don't fell good about it.

.

Gullible then?



No they were doing career building and politics. The only reason they wouldn't feel good is due to any threat to their little CBT pyramid scheme.

Then there is the issue of greed. Too many in that camp are on the payrolls of big insurance companies that want a reason not to pay.
Sadly the old adage : "Follow the money" seems to be quite a bit of the story here.

 

[Sasha]

The bureaucracy I see here is King's College. Whoever "owns" the data, it's very likely not the named researchers; it will be an institution. Before someone at level 5 of that institution's hierarchy can hand over that data, they need to know that there will be no comeback from levels 4, 3, 2, or 1. This can be as simple as knowing the Vice-Chancellor of King's had a discussion with the Vice-Chancellor of QMUL during which they agreed that the best policy was to tough it out, because they already got a bloody nose off the Information Commissioner last year over some other matter and these things count towards one's chances of a peerage. Note: I just made that up; I have no reason to believe that anything like that happened, but from the point of view of the person at level 5, it might as well be the case.

Interesting idea but it's hard to see KCL or QMUL as having any interest in suppressing the data - if they got a bloody nose off the ICO you'd think they'd be more anxious to hand data over, not less, and yet QMUL have appealed the ICO's decision that PACE data should be handed over to someone who asked for it 18 months ago (it's gone through a series of appeals).

First, just in case it wasn't clear: the existence of a vote among the researchers, and the current state of that vote, are both entirely hypothetical. [...] In this case, the group is the team that put together the data, and at some point said no to the first request for the data. From that point on, it becomes very hard for anyone to change their mind; and even if they do change their mind, they will know how hard it was, and will respect the difficulty that the others will be having. It is basically inconceivable that these nine people (again, to the extent that it's even their decision), having refused the data to Jim Coyne and others, will suddenly say "Oh, you know what, actually, here it is after all".

I understand that of course this idea of votes is hypothetical but I understand your point now about why a majority wouldn't necessarily rule.

These are smart people. That believe that what they do, most days when they get to work, is rational.

I really do wonder if they're still able to tell themselves that.

So for anything to change in their position, something has to change outside the current system. One example might be if the Science Minister, say, stepped in. (I don't have his number, unfortunately.) At that point, the researchers might say, well, he's taken responsibility, so it's no skin off our nose; they get to continue to believe that their refusal was rational, but he's given them a way out. They can go and have a pint and feel glad this is all over.

And yet Jim Coyne has stepped in and offered them a way out and look at how they insult him.

I really do hope that PLOS One are going to come through.

 

[jimells]

I genuinely don't believe that the PACE scientists are acting in any way with malicious intent.

... very few people in the UK rely on or benefit from private health insurance. If anyone benefits from the PACE model of 'pragmatic rehabilitation' its the NHS, DWP and ultimately the government/taxpayer.

The disability insurers are international corporations that reach around the globe. The effort to bury ME is also international. Thanks to a FOIA request by Craig Maupin, we have the evidence of intent to bury the illness, on NIH letterhead, sent to a CDC official, regarding a new "CFS" criteria, an effort that included Sir Simon and Sharpe:

 

[Woolie]

Glad I just have to work with smoking beagles!'.

Animal researchers get death threats as a matter of course. I know some personally. You don't see them whining about it in the media. Because that would escalate the situation. People in real danger from activists generally like to keep a low profile.

 

[Woolie]

But I believe the real problem is that the PACE authors have over claimed on their research (because they are true believers)

Yes, I think the very problem is that these researchers are "true believers". From their perspective, then, everyone's objections are designed to further lead us from the true path. Although the PACE study didn't find the supporting evidence they hoped for, they believe the underlying idea is still the right one. To them, the little holes and minor details of the study will distract people from the big picture, and in the long run, harm patients' chances of good treatment.

A nice analogy is the police detective who truly believes a person is guilty, and "enhances" the evidence against to ensure that the "right thing" happens.

Not saying career advancement doesn't also come into it, but - in any person other than perhaps a psychopath - this needs to be framed around genuine belief.

 

[jimells]

Animal researchers get death threats as a matter of course. I know some personally. You don't see them whining about it in the media. Because that would escalate the situation. People in real danger from activists generally like to keep a low profile.

I find it interesting that only the Wessely School members are allegedly receiving death threats, letter bombs, and mean emails. Biomedical researchers are not reporting alleged harassment, and neither are research psychologists like Leonard Jason.

There are a number of CDC researchers and NIH officials who are not held in high esteem by patient advocates - even they are not jumping on the "We're Scared of the Crazy Patients" bandwagon.

It's just the Wessely Gang. So there must be some secret conspiracy of ME patients that have all agreed to attack only the PACE people

 

[Woolie]

And as I noted above, even if all 9 researchers wanted to release the data

Not sure, @sTeamTraen. I'm a University academic, and I don't need management permission to share my data if I choose to. In the case of the PLOS request, they would not have had to go through upper management in order to share.

But if I didn't want to share my data, I might ask for management help to mount an argument to defend my decision.

 

[SOC]

Oh, we look back to our innocent pasts when we assumed exactly the same. I think that was the starting point for all of us. We've had some very hard lessons.

I had a similar thought to this. Back in the day when I was still a research engineer, I would have assumed the researchers here were working with the best (if misguided) intentions. That is probably because none of the researchers I knew would have dreamed of doing the kind of thing the PACE (and other BPS researchers) are doing. Even in my early days of ME, I was giving them the benefit of the doubt. Well-trained researchers simply don't do these things. Yes, there's the isolated corrupt individual, but it's not a pattern of behavior across a whole field.

I am no longer so naive.

What was my first clue that this so-called science was not on the up-and-up? The incredibly hostile attitude of the researchers toward the patient group they claim to be trying to help. That is NOT normal. It's a big red flag that something is very, very wrong and it's not in the patient group. You don't see scientists studying schizophrenia, for example, talking about patients like that or supporting people who do.

Once you see something is wrong here, it isn't hard to find the flaws in the way this group approaches scientific research. Peer review in the biopsychosocial field is extraordinarily incestuous. That is risky if you're relying on the self-correcting nature of scientific research and publication. Combine that with the economical and professional conflicts of interest in the UK BPS circle and you have a recipe for abuse and misuse of so-called science that I never believed was possible in academic research until I was forced to deal with the BPS school research into ME.

I empathize with @sTeamTraen. As a researcher, I didn't want to believe this kind of thing happens, either. I wish it didn't. I'd rather believe that business or bureacracy is controlling the misuse of science. Unfortunately, I had to face the reality that in this case, it's not the bureaucracy pushing the scientists off the straight-and-narrow, but the other way around. Not that the bureacracy in this case isn't perfectly happy to be given an easy out with ME, but they didn't go asking for bad science to support their existing decisions. They were offered bad science upon which they made bad decisions.

 

[SOC]

Not sure, @sTeamTraen. I'm a University academic, and I don't need management permission to share my data if I choose to. In the case of the PLOS request, they would not have had to go through upper management in order to share.

But if I didn't want to share my data, I might ask for management help to mount an argument to defend my decision.

Ditto. I routinely shared my data without taking the decision up the chain. It was standard practice to share data. Asking management if I could share data would have been like asking them if I could answer a ringing phone.

I'd say the only plausible reason management is involved in this case is that the researchers went to the administration for help to avoid releasing the data. Why, of all institutions, a university (this is not a business with a financial interest in the data) would take the position that releasing data from publicly-funded research is wrong is beyond me.

 

[Woolie]

Peer review in the biopsychosocial field is extraordinarily incestuous. That is risky if you're relying on the self-correcting nature of scientific research and publication

Yes, I agree this is a big part of the problem, @SOC. Biopsychosocial research is a different world, I think, where researchers are generally supportive and uncritical of each other. I get the impression these researchers aren't really in touch with what's been going on in the wider scientific community, as regards data sharing, reproducibility, biases in scientific reporting, etc.

 

[Sasha]

Excellent comment by @Jonathan Edwards on Nick's blog:

http://steamtraen.blogspot.co.uk/20...showComment=1450133140176#c141970579755405430

 

[Bob]

The investigators, via Queen Mary, University of London, have even (successfully) lobbied the UK government to change the FOI laws to make their data more difficult to access. That's not the ordinary work of a bureaucracy. That's sheer determination and heavy duty lobbying. These are not ordinary academics. It's not easy to get UK law changed; and that's an understatement.

 

[Esther12]

If PACE gets picked apart it will be very embarrassing for a lot of senior people. People in the Lords, senior people at the MRC, Wessely is president of RCP... on top of that we have the DWP involvement and their current cuts to disability benefits being built upon the biopsychosocial model of disability (which also underpinned PACE's approach to CFS). It seems unlikely that people at the top are going to over-rule the PACE researchers to get this data out. I think that the heavily guarded front-door will need to be stormed (unless an outside power like PLOS really takes a stand).

A defence of PACE, and a smearing of its critics, seems likely to be continued for as long as they can get away with it. Internationalising things should help, but this is a UK scandal, and that so many important people in the UK have an incentive to not notice it makes things difficult.

Also - I think that Strauss letter is okay in isolation, and I'm not sure how fair it is to blame him for some of the political problems related to diluted CFS criteria. (That's a literal 'I don't know', not a 'I don't think it is fair' 'I don't know').

 

[SOC]

Excellent comment by @Jonathan Edwards on Nick's blog:

http://steamtraen.blogspot.co.uk/20...showComment=1450133140176#c141970579755405430

Thanks, @Jonathan Edwards, for a clear, well-written, and sympathetic comment. We need more like that from other eminent scientists.

 

[CFS_for_19_years]

@sTeamTraen,
Thank you for joining us here at PR and for your blog article which discusses releasing the PACE trial data. It is well-written and very much appreciated.

I hope that you will be brave enough to dig your toe into what has been exposed about the trial data itself. We here at PR have been analyzing the data from PACE for years, and simply put, the data do not support the investigators' puffed-up conclusions.

You said on your blog:

I actually don't believe that the researchers have anything to hide, in the sense of feeling guilty because they did something bad in their analyses.

But that is exactly the point. They did do something bad in their analyses. While your blog post focuses on the importance of sharing data, please don't give them a pass on their intentions and their manipulation of the data to suit their intentions. To get a grasp of this, I think the best place to start is David Tuller's group of posts on this. Here is a page that summarizes everything David Tuller has written on ME/CFS and PACE:

http://www.virology.ws/mecfs/

A good place to start is the first link: http://www.virology.ws/2015/10/21/trial-by-error-i/

This is from David Tuller's trial-by-error post:

This examination of the PACE trial of chronic fatigue syndrome identified several major flaws:

*The study included a bizarre paradox: participants’ baseline scores for the two primary outcomes of physical function and fatigue could qualify them simultaneously as disabled enough to get into the trial but already “recovered” on those indicators–even before any treatment. In fact, 13 percent of the study sample was already “recovered” on one of these two measures at the start of the study.

*In the middle of the study, the PACE team published a newsletter for participants that included glowing testimonials from earlier trial subjects about how much the “therapy” and “treatment” helped them.

If you'd prefer to see a visual analysis of the data from the PACE trial, we've got videos on YouTube, thanks to the work of a patient with ME:

 

[Sean]

Animal researchers get death threats as a matter of course. I know some personally. You don't see them whining about it in the media. Because that would escalate the situation. People in real danger from activists generally like to keep a low profile.

It is an act, a melodrama, designed for no other purpose than to make them out to be both the victims and the heroes in this situation, when the perverse appalling truth is the complete opposite.

Their constant beating up of the (alleged) dangers also has the very useful effect of discouraging new minds from entering the field, which helps keep the whole show and narrative under their control.

 

[alex3619]

I would agree except for the fact that very few people in the UK rely on or benefit from private health insurance. If anyone benefits from the PACE model of 'pragmatic rehabilitation' its the NHS, DWP and ultimately the government/taxpayer.

With the ongoing privatization of the NHS this may no longer hold. More and more will need private health insurance as the public system goes into decline.