Queen Mary and PACE, just what is their case?

[A.B.]

It's a bit like the Catholic church and the protestant reformation. A corrupt, degenerate clergy wanted to remain the gatekeepers that interpreted the bible, written in latin, for the masses. People actually wanted to read the bible and interpret it themselves. New technology (the printing press) made it possible to disseminate translated bibles.

Today we have the internet which makes sharing of information easy. We're not quite there yet but eventually open access and data sharing will win and interpretation of studies will be unrestricted. Online courses on interpretation of clinical trials will grow in popularity. And people will discover that a number of experts are actually shockingly incompetent and corrupt.

It's not a great comparison but the parallels exist and we know the protestant reformation had a vitalizing effect on countries were it took place. Countries that resisted, such as Italy, were negatively affected by the counterreformation.

So on what side does the UK want to stand? Open science that promotes transparency and accountability, or closed science that promotes corruption and waste of resources?

 

[Simon]

They do not believe in it and therefore they attack it, often with obsessional attention to detail and a refusal to accept the integrity of the science.

Hmm. As @Esther12 says, obsessional attention to detail is often seen as an important trait in science. There is also now a wide consensus* in Life Sciences that much research is unreliable and scientists can't rely on published findings. Not least of the problems is the unwillingness to challenge findings aka "accepting the integriy of published science". That's not how good science works: scrutiny, debate and replication is at the heart of establishing scientifc truth.

Claiming scientific authority, that patients or anyone else should blindly accept, as opposed to being willing to engage with legitiamte criticism (ie specific scientific arguments rather than name-calling), is now old hat. And was always wrong.

*eg Ioannidis's landmark 2005 paper Why Most Published Research Findings Are False has been cited a jaw-dropping 3,855 times, including in editorials in prestigious journals such as Nature and Science (both of which have admitted they need to raise their game on research standards).

 

[A.B.]

I wonder what Ioannidis would say about the PACE story.

 

[Chrisb]

I do find this document rather strange. It seems to be far too discoursive and unalytical for its purpose.

It is surprising that the writer stresses the extent to which matters are dealt with on a case by case basis but then resorts to the argument that disclosure of this information, which would be reasonably practicable, must be refused because it would encourage further applications.

This seems to be a variation of the well known principle that it is necessary to hang an admiral from time to time to encourage the others. The only other discernable argument was "we know where you live."

If this is the way British universities work it is no surprise that the government has had to go to Canada to find a new information commissioner. After all, the experiments with Carney and Goddard (yes- I know she is a New Zealander) have been so successful. Perhaps she has been employed to crack the whip.

https://infolawcentre.blogs.sas.ac.uk/tag/elizabeth-denham/

 

[TiredSam]

The names of the contributors, along with their world views, are all in the public domain.

"Their world views"

What is he talking about? Do we have a world view, and does he know what it is, and if we did and he did, would it be a legitimate reason for denying a FOI request? I wish someone had told me I was signing up for a world view when I got ME, there's no mention of it in the IOM report, or my diagnosis from a much more credible institution than QMUL.

I wonder how much of this document would be left if all the unfounded slights and baseless attributions of motive and character were removed from it?

 

[Graham]

At @Graham — did you have any right of reply to this 'argument' re motive from QMUL?

Yes, I did reply, but the Information Office decided against me. I decided not to take it further as, in comparison with the request for key data currently waiting a ruling from the Tribunal, this was small beer. I did manage to work out what the values were from a better quality copy of the graph, and was able to cross-check the baseline values which were available elsewhere. I have since produced my analysis of CBT and objective assessment, and used my estimated values.

Here is what I wrote:

I believe the issue is quite simple. I am asking for the actual plotted values shown in a small graph in a recently published study. This is important because, when the PACE trial was being set up, emphasis was placed on the fact that both subjective and objective data would be used to assess the effectiveness of the therapies. Instead, the use of the actometer was dropped, and the results of the 6-minute walking test showed minimal change: the value of these results were then downplayed on the grounds that the tests had not been conducted appropriately. The position on health benefits claimed and patients in full or part-time work actually worsened a little over the course of the trial, which was blamed on the financial situation and the fact that patients had been out of work for a while. As objective measures, that only left the results of the step test, which were initially held to be important measures of the deconditioning hypothesis. These have not been included in any analysis of recovery or improvement, but simply as a minor graph in the appendix of a complex, statistical analysis of mediation, where they will have been missed by many. As a patient I believe I have a right to accurate information about treatments that can affect me, and this data is important.

I used to be a Head of Maths, and that included teaching Statistics modules as part of both Mathematics and Further Mathematics at A-Level. I went down with ME in 1999: my son went down with it 10 years earlier. My analysis of previous studies of CBT as a treatment for ME/CFS has led me to believe that the evidence for it is very weak indeed, and my analysis of the PACE trial, as far as can be managed, suggests that, with the improvements on subjective assessments being small, the potential for peer pressure influencing the responses is large. This last set of objective data is an important part of the results for this major study.

The trial was funded by public money, and the desire is to discover the truth. If there is an improvement due to these therapies, then the data will reflect that: it would be difficult to misrepresent such a small set of data. I have never made any secret of my scepticism of the claims that CBT or GET is effective for ME/CFS, but scepticism is an essential quality of any scientist wanting to get at the truth.

As far as I understand it, that is all that there is of the case, but as QMUL have produced a 14 page criticism, much of which is not directly related to my request, I will try to respond briefly to the gist of their comments, particularly as many of the comments are personal.

First of all, I am not responsible for the behaviour of others, although it is pretty clear to me that if the PACE authors had released results for the outcomes that they had chosen and published in their protocol, or had tried to come to a negotiated agreement over the release of some of their data, they would not have been subjected to repeat requests, which they have chosen to refuse. Yes, I am sceptical of many of their claims: that is the duty of any scientist. The quality of the analysis presented has been poor, and I have clearly said so. When the first paper was published in The Lancet, a group of us got together to pool our expertise to study it. That is no different from there being a group of doctors and researchers pooling their expertise to produce the paper in the first place. It is called teamwork. We tried to engage in a discussion with both The Lancet and Prof. White. In both cases we were ignored. We repeated our attempts to engage in discussion, and again were ignored. The Countess of Mar intervened on our behalf, but still we were ignored. With a record like that, obviously I am critical of PACE's refusal to participate in discussion.

It is interesting to note though that there is now an open letter to The Lancet, with 42 signatures from respected researchers and doctors calling on PACE to release its data. There are calls from all the ME charities for PACE to release data. There are concerns expressed by doctors, researchers and medical journalists from around the world. Is that, too, seen as part of "my" campaign?

I have no idea why comments on Twitter have been brought into the discussion: I have never been part of Twitter. All my online comments are clearly set out under my name. But it is clear that a large number of patients (many of whom have significant scientific and research backgrounds) have grave misgivings about the secrecy around the PACE trial. Am I being held responsible for their actions?

It is true that, in response to many people asking me, I have produced a number of videos covering both the lack of public funding of biomedical research into the illness, and explaining to a more general audience the nature of the disquiet over the way that the PACE data has been analysed. It is also true that those specific concerns have yet to be answered. My blog also has tried to explain other matters, including the recent one about an important error in the interpretation of statistical measures from an entirely different 2007 study into ME and prior psychological problems. I am, after all, a maths teacher by profession. I believe that knowledge and information must be shared and communicated in such a way that it is accessible to as many as possible. I find it strange that, in replying to Sir Simon's cruise-ship foray into the debate, my contribution is seen as evidence of being part of a campaign to have the PACE data released, whereas his part is not considered part of a campaign to prevent it.

Recently a local friend of mine, with ME, attended a health-insurance related interview. It started with the representative asking why she wasn't on anti-depressants, because "everyone with CFS should be", then went on to assure her that anyone who had done CBT properly would be cured. It is just as inappropriate to try to tie this in with the attitude of the PACE authors, as it is for them to tie the actions of large numbers of other people to me. I could quote many unpleasant and inappropriate remarks made to patients by doctors about this illness, but that too would be inappropriate. Why are so many of the pages from QMUL related to comments and issues that have nothing to do with me? I have tried to be critical, analytical, and open: I have tried hard to adhere to the principles that I had as a teacher – criticize any wrong actions, but do not make personal attacks – but I do not claim to be perfect.

According to PACE, prior to posting their first paper, the required results show whether there is any evidence to support their prime hypothesis of deconditioning. If the data were to show that CBT or GET is effective, then I would be amongst the first to say so. Much more than that, if I find anything that is truly effective, not only will I publicize it, but I will be first in line to be treated along with my son. Believe me, no-one wants to remain this ill.

 

[Woolie]

The length and complexity of certain correspondence would also indicate a degree of obsessiveness from requesters.

The length and complexity of the materials they have submitted - and the money invested in legal advice -in their various attempts to prevent release of the PACE data would also indicate "a degree of obsessiveness" from QMUL.

Or fear avoidance beliefs?

Definitely pervasive refusal syndrome, eh?

 

[TiredSam]

After such an excellent response @Graham the Information Office can hardly plead ignorance, although sadly that is precisely what they demonstrated.

 

[sarah darwins]

Yes, I did reply, but the Information Office decided against me.

And what a reply it was, Graham. Well done. Given your reasoned and sensible arguments, and QMUL's swathe of irrelevant verbiage, I am at a loss to understand why the ICO ruled as it did.

 

[Esther12]

And what a reply it was, Graham. Well done. Given your reasoned and sensible arguments, and QMUL's swathe of irrelevant verbiage, I am at a loss to understand why the ICO ruled as it did.

It is a bit scary, isn't it? In the UK, we face a lot of unpleasant prejudices. Thanks a lot to Graham and anyone else willing to publicly engage with institutions like this.

 

[Dolphin]

This is the graph about which Graham requested data

 

[Snowdrop]

I've read much of what has been posted recently but not all. A lot of intelligent things have been said here.
I just want to add my bit. I was thinking along the lines of @A.B. 's post.

Then there's the belief system AB touched on. We've gone from religious dogma to science dogma. They are right by virtue of being authority. This isn't just about ME and our community any more. Treating science this way devalues science.It's not too much to say it puts human culture back a ways. And why the vitriol over citizens wanting data that has been publicly funded and in which they have a stake? It's as much as saying that we should remain ignorant peasants not well educated citizens each of us with the capacity to understand those bits of the world that hold our interest. That is the implication of a larger issue in what they've said.

I imagine something like this scenario--originally the BPS firmly held their beliefs about this illness and it's pyschiatric origins. At the same time CBT/GET was gaining ascendancy as a treatment that could be effective and cheap. They made certain promises to politicians over cocktails about how this could be treated and at minimum cost. The only big expense needed was the money for researchers to provide the documentation that supports the treatment.

At some point it started to become clear that the evidence for PACE was not as robust as they hoped (and I doubt that they were feeling it needed to be all that robust for them to support it) So now they're stuck in this not knowing how to get out they are lashing out. I think this explains some of the vitriol toward the ME community. They're pissed off at the corner they're in and at being called out. It's like we should know better than to confront our betters like this --it's unseemly. Their careers are not to be tarnished by some disgruntled sick people.

Except we are not the authors of this story and it would have been much different if the authorities had just listened to patients at the start rather than dismissing them. If the data was sound like they expected I doubt that they'd so riled over our requests. They would have been dealt with already by answering our concerns in the beginning by responding with the science that supports the position.

It's been pointed out --they have never engaged with the specific criticisms of of the data analysis. Why?

And as for the letter to @Graham it reads like something a lawyer would write. And I expect one did. They would have no vested interest in what's true or not just what can be used to prove the points their client wants emphasised. And they are obsessive and attentive to detail--like that's a bad thing in some contexts (of course not).

Thank you to Graham for all this work on behalf of our community.

I don't happen to think PACE is going away. Even as the biomedical research increases along with new interesting findings I think they know they've got time still and instead of focusing on the UK they are exporting the treatments to other EU countries in hopes of entrenching and of producing new research that will come to support PACE (and not be their own handiwork) having learned lessons from that experience.

 

[Aurator]

I don't happen to think PACE is going away.

It won't do any time soon, no, but then neither will countless mistreated PWME, as long as PACE's scientifically unprincipled proponents continue to justify their salaries by harmfully shoving it down sick people's throats, making claims about it that the facts can't substantiate, and spending inordinate amounts of time writing 13 page apologetical diatribes in which they complain vociferously of how much of their precious time has been squandered defending the indefensible against legitimate and perfectly justifiable scrutiny.

We understand your paranoia, QMUL, under the circumstances, and your need to offload. There is another way, though, that would spare you all of this grief. You know what you need to do.

 

[moosie]

@Graham You are such a star. What a brilliant reply. How you manage to stay so calm and clear in the face of all this I don't know. I can only imagine how much hard work this whole thing has been for you. I thank you from the bottom of my heart and hope it hasn't taken too great a toll on your health.

 

[Sidereal]

Extraordinarily bizarre document. Very strange things going on in these British universities. I've never seen this level of institutional support/ass-covering for a bunch of research hacks. Nothing they've done has benefitted patients and surely their work must be psychologically unrewarding for them given the amount of failure and opposition their treatments generate. So really, cui bono from this garbage? Really makes you wonder if psychosomatic medicine is shielded from normal scientific scrutiny because it has to continue to exist in order to minimise financial exposure for the state and insurance companies.

 

[Graham]

Thanks @moosie , but I must confess that I was a maths teacher for many, many, many years. It takes a lot more than these guys can manage to ruffle my feathers! I'm one of the fortunate ones who although too ill to work, I am able to potter about. I look at my son who cannot remember what it is like to be well, to wake up in the morning with a zing, and I look at various friends who are really struggling, and realise how lucky I am. So that drives me on. I can honestly say that although it has taken a lot of time and energy, it hasn't affected my health. More importantly I have many friends who help me out, read over my stuff and improve it, give me ideas, draw my attention to things I didn't notice, so I owe them a lot. If I am a star, then I'm only one in a galaxy of folk like the ones here!

 

[Kati]

Thank you @Graham

 

[eastcoast12]

Thanks @moosie , but I must confess that I was a maths teacher for many, many, many years. It takes a lot more than these guys can manage to ruffle my feathers! I'm one of the fortunate ones who although too ill to work, I am able to potter about. I look at my son who cannot remember what it is like to be well, to wake up in the morning with a zing, and I look at various friends who are really struggling, and realise how lucky I am. So that drives me on. I can honestly say that although it has taken a lot of time and energy, it hasn't affected my health. More importantly I have many friends who help me out, read over my stuff and improve it, give me ideas, draw my attention to things I didn't notice, so I owe them a lot. If I am a star, then I'm only one in a galaxy of folk like the ones here!

As a fellow teacher I completely agree. After dealing with a bunch of crazy teenagers it sure as hell takes a lot to get us crazy.
Thumbs up to you Graham for what ya did.

 

[Graham]

I don't happen to think PACE is going away.

Well, I've just heard that Alem Matthees' request for data from them has been upheld by the Tribunal.

 

[sarah darwins]

Well, I've just heard that Alem Matthees' request for data from them has been upheld by the Tribunal.

And from the sound of things, that tribunal dismissed the kind of stuff QMUL threw at you as baseless.