The PACE trial [pro]: It’s time to broaden perceptions and move on. Keith Petrie, John Weinman

[Stewart]

A quick google clearly shows Professor Keith Petrie and Professor Sir Simon Wessely have worked together repeatedly over the years, well I never, what a surprise.

I have this mental image of Simon phoning round all his friends, desperately trying to find someone who'll write something - anything - in defence of his precious trial ("...it's a thing of beauty...") and finding that the usual suspects are less willing than they've previously been to stick their heads above the parapet in defence of PACE.

Finally, to his relief, Keith Petrie agrees. But then Petrie and his collaborator quickly bash out this half-hearted, ill-informed grabbag of discredited gubbins. It's difficult to believe that it took two people to write such a cursory, out-of-date 'defence', seemingly lacking even a basic understanding of the controversy surrounding PACE - but then I suppose if I'd quickly written an article on an issue I didn't understand as a favour to a friend, I would want someone else's name alongside mine on the byline, sharing the embarassment...

Hopefully anyone who takes the time to read the 8 or 9 articles that the Journal of Health Psychology has published recently criticising PACE can't help but be struck by the inadequacy of a response which *completely* ignores all the serious concerns highlighted in the earlier papers.

 

[Barry53]

Hopefully anyone who takes the time to read the 8 or 9 articles that the Journal of Health Psychology has published recently criticising PACE can't help but be struck by the inadequacy of a response which *completely* ignores all the serious concerns highlighted in the earlier papers.

I think it indicates the ongoing decline of the PACE camp. I suspect that in the future, looking back, it will be seen that during its progressive decline, attempts to defend it became increasingly ludicrous and pathetic ... and frankly laughable. I think it shows they are becoming increasingly desperate, and can see their train is about to completely derail.

 

[Sean]

There appears to be a belief that subjective psych opinion overrides fact (which is why it is so useful in supporting political and commercial interests).

They are inextricably and terminally intertwined in this case.

I'm not really sure I believe in the notion of the mind. That's just the observed effect of what the brain is doing.

Reminds me of the old half-joke in consciousness research: The mind is what the brain does for a living.

It looks like the authors got their talking points directly from Wessely et al.

As does almost every public defence of PACE so far.

I will bet that, rounded off to whole integers, the average Wessely number of PACE defenders is 1.

Wessely will go down in history as a classic warning example of why one individual should not be allowed to have fingers in every significant pie in one field.

 

[slysaint]

"Patient beliefs about CFS and in particular causal beliefs about the illness are clearly important in understanding the reaction to the PACE trial."

What about the scientists, charities, research organisations (140+) calling for the retraction of PACE? Are they all suffering from the same 'delusional beliefs' as the patients?

 

[A.B.]

It looks like Weinman and Petrie have taken cash to have their names attached to this service. To act as the "respectable face" of this business.

Let's examine the evidence: http://www.atlantishealthcare.com/outcomes

Belief-driven Behavior Change was applied through SMS interventions, based on individual beliefs, to improve medication adherence.

Adherence to asthma preventer medication improved by 27% at 9-month follow-up.

Highlights

• Run as a randomized controlled trial (RCT) with a standard care control group.
• Ethics approval obtained before trial conducted.
• Results published in a peer-reviewed academic journal
• Proof SMS is a cost effective, accessible way to improve medication adherence.

Oops we can't actually examine the evidence because they don't tell us the name of the study. There's also the question of whether improved adherence actually translates into better outcomes (maybe patients are better at finding the right dose than their doctors).

They also refer to other studies for other health problems but again no title is given.

My impression: information is presented selectively to readers for the purpose of persuading them, which suggests that readers would be less likely to persuaded if they were in possession of all relevant information.

 

[Barry53]

I'm not really sure I believe in the notion of the mind. That's just the observed effect of what the brain is doing

As a software engineer I think of the brain as akin to the microprocessor, memory, etc - the hardware hosting the software. And the mind as the software/firmware/drivers that run within the microprocessor etc. The brain being the hardware, and the mind being the "code" running on it - but of course brain/mind is a much more complex beast I suspect.

 

[lilpink]

Eww, this is interesting, @lilipink:

Glad you've picked up on that. It's very interesting isn't it?

 

[arewenearlythereyet]

As a software engineer I think of the brain as akin to the microprocessor, memory, etc - the hardware hosting the software. And the mind as the software/firmware/drivers that run within the microprocessor etc. The brain being the hardware, and the mind being the "code" running on it - but of course brain/mind is a much more complex beast I suspect.

Yes I think there is also that annoying evolution thing .....when we update a computer, we throw the old one away. Unfortunately nature doesn't do this. We all still have a commodor vic 20 embedded deep that keeps on firing off some basic but occasionally unusual programming.

 

[Gijs]

Ofcourse The Pace disciples like to move on their CBT religion is under attack. The disciples don't like criticism on their masters Wessely, White and Chalder. If you don't believe you are a harasser!

 

[alex3619]

I'm not really sure I believe in the notion of the mind. That's just the observed effect of what the brain is doing. Some people seem caught by the "I think therefore I am" statement but this lot have an alternative version of "I think therefore I am ill" but I still prefer the "I don't think therefore I'm not"!

= monism.

 

[Woolie]

@Barry53, I'm not sure I agree. I think the mind is a way of describing the massed action of our brain/body at a level that's better suited to really complex actions (I say body because some of the mind stuff could have a physiological, visceral component).

So liken it to describing someone's leg. You can describe the leg in terms of its anatomy and physiology. Or, at the other end, you can describe the actions it generates, the running, jumping, kick-boxing, doing the can-can and such.

Its not really that useful to describe things like kick boxing movements in terms of leg anatomy/physiology. You could do it, but chances are you'd lose the very essence of what the art is. So you talk at a higher level, about the coarse-grained pattern of movements instead.

 

[lilpink]

ATLANTIS Healthcare IS interesting. But it is also very worrying:

http://www.atlantishealthcare.com/news/details/the-nhs-change-day

 

[alex3619]

The brain being the hardware, and the mind being the "code" running on it

I think this is deeply flawed but better than mind-brain dualism. Its was a good argument thirty years ago. The hardware and the software are in this case the same. Another flawed but better view is of the brain as a neural network. I actually think this view could probably be right if it were rigorously updated.

The brain does have a deep information processing architecture, some of which is innate, but most of which is adaptive. It just tends to derive similar architecture from similar internal and external environments, based on its own innate rule set.

One of the problems is the brain is indeed capable of being modified through training, but what can be consciously modified is probably a teeny tiny subset of the whole. This is largely still black box territory, and its the unknowns here that seem to give some proponents of psychogenic theory a presumed licence to go beyond evidence.

 

[Woolie]

ATLANTIS Healthcare IS interesting. But it is also very worrying:

http://www.atlantishealthcare.com/news/details/the-nhs-change-day

Not sure what to make of it, @lilpink. It seems to consist of things like text reminders to take your medicine and perhaps little reminders of the benefits. Which seems innocuous enough. I guess it could be abused though, if they extended it to monitor patient adherence or something.

 

[helperofearth123]

I'm not going to move on until the NICE guidelines are updated and CBT and Graded exercise therapy are removed. And also until no more funding is sucked up by further studies on these 'therapies'.

He's pissing in our pocked and telling us its raining. 'Move on, while we continue to take your funding and mislead your GPs about how to treat you.'

 

[arewenearlythereyet]

I'm not going to move on until the NICE guidelines are updated and CBT and Graded exercise therapy are removed. And also until no more funding is sucked up by further studies on these 'therapies'.

He's pissing in our pocked and telling us its raining. 'Move on, while we continue to take your funding and mislead your GPs about how to treat you.'

And not to mention removal of any support whatsoever from employers, insurance or the state.....sorry raw today so I thought I would slip that one in.

 

[Valentijn]

It seems quite cunning of the editor, David Marks, to include a pro-PACE piece as bad as this in the line up! It would be hard to be as ill informed as these authors. All they needed to do was download Simon Wessely's tweets and paste them together at random.

I don't think most people will get past "Cartesian dualism" in the abstract. At that point it's clear that it's going to be a bunch of philosophical fluff. They really are doing us a favor with the "mind and body" line of argument, since people are familiar with similar faith-based quacks advocating prayer, crystals, and tapping into the energy of the universe to use their minds to cure their bodies. They destroy their own credibility.

So saying Cochrane published a review does not provide any form of coherent defense against the failures of PACE yet this is the strongest argument they put forward.

They can't make a logical or scientific argument in support of PACE, so they fall back on an appeal to authority instead. If a logical fallacy is the best they can do, they're beat.

And it's all academic to them. It's not their lives being affected by this religious belief called PACE.

I don't know. Maybe there is a way to reduce the physical functioning of healthy people to approximate a score of 60 on the SF36. Then they can stay that way until they admit it's nowhere near normal or healthy functioning

 

[Gijs]

I think this is deeply flawed but better than mind-brain dualism. Its was a good argument thirty years ago. The hardware and the software are in this case the same. Another flawed but better view is of the brain as a neural network. I actually think this view could probably be right if it were rigorously updated.

The brain does have a deep information processing architecture, some of which is innate, but most of which is adaptive. It just tends to derive similar architecture from similar internal and external environments, based on its own innate rule set.

One of the problems is the brain is indeed capable of being modified through training, but what can be consciously modified is probably a teeny tiny subset of the whole. This is largely still black box territory, and its the unknowns here that seem to give some proponents of psychogenic theory a presumed licence to go beyond evidence.

The mind is an illusion of the brain. I call it emergent.

 

[Sean]

I think this is deeply flawed but better than mind-brain dualism. Its was a good argument thirty years ago. The hardware and the software are in this case the same. Another flawed but better view is of the brain as a neural network.

Read a book many years ago arguing that the brain was basically a giant gland, and that there should be more funding of research into the brain as a giant gland.

Written by a neuro-endocrinologist researching the giant gland aspect of the brain, you won't be surprised to learn.

(Not saying he was wrong.)

 

[Robert 1973]

"Patient beliefs about CFS and in particular causal beliefs about the illness are clearly important in understanding the reaction to the PACE trial."

What about the scientists, charities, research organisations (140+) calling for the retraction of PACE? Are they all suffering from the same 'delusional beliefs' as the patients?

It appears that the false beliefs are mutating. We already know how dangerously infectious these false beliefs can be. Now it appears that there are new strains evolving which are even more infectious but biologically asymptomatic to some carriers. These people (like @Jonathan Edwards) are the most dangerous of all because they can spread infection whilst appearing to be completely healthy and therefore safe to listen to. Do not be fooled. Their dogmatic adherence to the scientific method and their reckless respect for patients can induce very serious immunological, neurological and metabolic disturbances in predisposed individuals.

The solution is two-fold. First, mass-immunisation of the entire population with preventative CBT. Second, the establishment of an investigative committee (modelled on the House Un-American Adtivities Committee) to purge society of these dangerous subversives.