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

[Snow Leopard]

More Weinman

Patients’ Perceptions of Their Illness: The Dynamo of Volition in Health Care
https://www.fmhs.auckland.ac.nz/assets/fmhs/som/psychmed/petrie/docs/2012-dynamo-of-volition.pdf

A text message programme designed to modify patients’ illness and treatment beliefs improves
self-reported adherence to asthma preventer medication
https://www.fmhs.auckland.ac.nz/assets/fmhs/som/psychmed/petrie/docs/2011-text-message-asthma.pdf

Note that in the above studies, treatment adherence was self-reported, ie on the phone. So factors such as social desirability bias (eg participating in a trial, you'd be expected to increase reporting) are in play. The problem is they didn't use objective outcome measures - so there is no direct evidence that such increased adherence reporting was associated with improved health outcomes.

The authors actually preference beliefs over objective outcomes:

While it seems possible that negative perceptions are indicative of poorer prognosis, studies have generally found that illness perceptions not only fail to relate closely to objective measures of disease severity but also are often better predictors of outcome.

ie they believe that subjectively reported outcomes (including the many biases that go into such reporting) are more important than objective outcomes of health. They present an interesting hypothesis claiming that beliefs of greater severity led to poorer outcomes in several studies. But yet there is a surprising lack of evidence that modifying these beliefs led to improved objective measures of functioning except in one (Petrie) study (Illness perception intervention for myocardial infarction patients), which found that the intervention group went back to work a few days earlier, but by 3 months, there was no significant difference (6 months results not reported):
(52 intervention, 51 control (Intention To Treat), 33 in each group at this specific follow up at 3 months)

The difference between groups in the proportions working or not working (either part- or full time) was not statistically significant

 

[JaimeS]

I was skeptical at first. Dangerous bedridden patients? But as the authors cite the esteemed publication "The Guardian" as a reference, my doubts have been erased.

Just what I thought! Wow, the Guardian, that bastion of scientific integrity...

And the other one that appears to be scientific because it was published in a journal, is actually a piece of journalism, published by a freelance journalist.

Here is how it begins:

There are jobs that carry a risk, such as volunteering as a human cannon ball at a funfair. There are jobs that attract opprobrium and abuse, such as becoming an estate agent, driving a white van, or selling double glazing over the telephone. And then there is the job of trying to conduct research into chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

That's charmingly put, but this is not a scholarly source. How are they citing this? One gets the impression that BMJ agree so readily that patients are violent maniacs that they didn't even check who says so.

they don't actually put forward an argument beyond saying they believe mind and body are linked and hence they are right

That's the psychosomatic view in a nutshell. There is no mechanism outlined, and there will never be, for why these therapies work; that is the kit and caboodle. "Because the mind and body are connected, when you feel more at ease, your health problems go away. You feel more at ease when we talk to you." <--- Do. We?

Since PACE we seem to have an increasing number of quality researchers involved particularly in the US where funding is becoming more available.

Unfortunately, that may not last long.

The fact is that some people, ie Ian Lipkin who had unpopular findings eg disproving the association of XMRV, instead of being pushed away due to angry patients, has become more deeply involved, including eating many hot chillis for us.

It's fascinating how neatly these criticisms side-step:

• Lipkin and Hornig, USA (Columbia U.)
• Davis and team, USA (Stanford U.)
• Fluge and Mella, Norway (University of Bergen / Haukeland Hospital)
• Armstrong and team, Australia (U. of Melbourne)
• VanElzakker (Harvard)
• Naviaux (University of California)

...and on, and on. Those biomedical researchers don't exist and their findings at their prestigious institutions are what Shorter would call 'blips'.

raise the intelligence of their arguments

I half want to do this as a farce, but I'd probably end up honestly trying to prove psychosomatic attribution (or something like it) to see if I could!

Seriously, though, I'm not sure how to prove, or even convincingly support psychosomatic attribution.

So many replies I'd like to make but I'll cut this one off for now! This comment is long enough.

-J

 

[JaimeS]

I'm confused, are they acknowledging that ME/CFS is a physical disease just like cancer, or are they saying that all diseases are "bio-psychosocial" and can be cured by talking at patients and forcing them to do GET?

...they don't know, either. We talked on another thread about how these people are not exactly self-analyzers. But you seriously do see articles claiming that CBT helps everything from cancer to diabetes. The thing is, CBT practitioners who see cancer patients would never, never claim they can cure cancer. Instead, they'd say something like, "I teach my patients coping skills" or "I help my patients through positive thinking". They may believe it affects the course of their illness to a certain degree, or they may feel that talking things through and learning coping skills just makes the patient feel more comfortable in a difficult situation. I'm sure there are lunatics who believe they can cure cancer through the power of their words alone, but my impression is that they are outliers.

But ME/CFS is less real an illness than cancer. It's real-not-real. GET/CBT practitioners must be very zen: they have to hold the paradoxical thoughts that ME/CFS is in the mind of the patient, yet is simultaneously very real. The first justifies their attitude; the second, their paycheck.

That article sounds like end-stage death rattle.

Watch out, Sean! That sounds like it could be a death threat!!!

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

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

Our pledge is to deliver engaging digital support programmes that can give patients the power to accept and adhere to their treatment.

Can you think of a more dystopian sentence? This blows me out of the water. "Giving patients the power to OBEY." How positively 1984.

The certainty of their connection to this company is worrying because they didn't declare it. I think it's natural that they would seek money out that relates to the position and belief-system they have embraced, but then you have to announce that you've done so. That's how it works in science.

 

[JaimeS]

From that same article:

“It is a relentless, vicious, vile campaign designed to hurt and intimidate,” Professor Wessely says. “For some years now all my mail has been x rayed. I have speed dial phones and panic buttons at police request and receive a regular briefing on my safety and specific threats.

What? Seriously? I mean I suppose someone with a knighthood could get the police to agree to such a thing, but then how is it that no one was able to provide evidence that such a threat exists? The tribunal ruling showed pretty conclusively that they had nothing, and the tribunal also made the assessment that they had inflated these 'death threats' for dramatic purposes.

“Since PACE was published this has become more intense, and at present the police are looking into two cases in which specific threats have been made to my physical safety. These people are sulphurous, vicious, horrible.”

Wow, these 'death threats' were before PACE? Imaginary violent people are more well-informed than I am.

-J

 

[trishrhymes]

Those quotes from Wessely are shocking, not because he claims to have been threatened by 2 people, which is obviously a bad thing, but because he attributes to a whole group phrases like ' sulphurous, vicious, horrible'.

By conflating polite requests for data, and scientific questioning of his theories with a very small number of threats which may or may not come from ME sufferers, he's blown up the level of threat massively, and has labelled millions of very sick people as criminals.

That is clear prejudice and discrimination. I can't see any difference between this outrageous slur on me and my fellow sufferers, and the vilest racism.

 

[lilpink]

Can you think of a more dystopian sentence? This blows me out of the water. "Giving patients the power to OBEY." How positively 1984.

I agree. It's Orwellian. The use of the word 'non-adherence' is interesting I feel. Substitute 'non-compliance' which is really what they're attempting to correct and things sound considerably more distasteful. If that's even possible.

 

[Binkie4]

I still don't understand why Wessely hasn't been " called" on these allegations of repeated abuse by patients. Whenever he or his theories are in difficulties, out come statements like this about patients.

But Prof Chalder could not name any instance of abuse to her or her colleagues ( other than one instance of heckling by one person) when under oath at the tribunal. I seem to remember the Countess of Mar recording in a letter that there was no abuse by patients, using this as evidence, and I don't remember him challenging this.

Why isn't Wessely called on to "put up" or " shut up".

 

[lilpink]

KCL involvement with Atlantis Healthcare:

http://impact.ref.ac.uk/CaseStudies/CaseStudy.aspx?Id=41304

http://www.kcl.ac.uk/lsm/research/divisions/ips/research/clinicalprac/Expertise.aspx (see point 2)


Some Atlantis Healthcare psych people -

Jonathan Reston - visiting lecturer KCL

Sumaira Malik - visiting lecturer KCL


It would seem they're quite big on ACT - Acceptance and commitment therapy - https://en.wikipedia.org/wiki/Acceptance_and_commitment_therapy

 

[lilpink]

It never occurred to me that such an organisation should exist.

Probably most sensible people would assume academia & translational research should drive health policy .. 'evidenced based medicine' and 'all that' . It's very worrying to me as a lay individual to discover that academics themselves are unaware of this 'creepy' organisation hiding in the shadows. Surely this is something academics in medical disciplines ought to be aware of? How best can this information be disseminated?

 

[Barry53]

Those quotes from Wessely are shocking, not because he claims to have been threatened by 2 people, which is obviously a bad thing, but because he attributes to a whole group phrases like ' sulphurous, vicious, horrible'.

By conflating polite requests for data, and scientific questioning of his theories with a very small number of threats which may or may not come from ME sufferers, he's blown up the level of threat massively, and has labelled millions of very sick people as criminals.

That is clear prejudice and discrimination. I can't see any difference between this outrageous slur on me and my fellow sufferers, and the vilest racism.

I was about to similarly comment. If there is some seriously wacko extremist making such threats, he/she clearly is not part of the mainstream opposition to SW et al, and of all the people best qualified to understand that it will be SW ... but for some odd reason he chooses to hype it up and conflate as if the same - funny that.

 

[Barry53]

I still don't understand why Wessely hasn't been " called" on these allegations of repeated abuse by patients. Whenever he or his theories are in difficulties, out come statements like this about patients.

But Prof Chalder could not name any instance of abuse to her or her colleagues ( other than one instance of heckling by one person) when under oath at the tribunal. I seem to remember the Countess of Mar recording in a letter that there was no abuse by patients, using this as evidence, and I don't remember him challenging this.

Why isn't Wessely called on to "put up" or " shut up".

It does make you wonder if maybe this should be an area of focus? We in PR would be more than happy (I would sincerely hope) for the exposure of people making serious death/harm threats to anyone (and I do mean anyone); quite apart from the fact such things are just plain wrong/illegal/immoral (and drags you down to their level), it also - as we know so well - provides fuel to those who seek to tar all ME/CFS advocates with the same brush.

It would then be much easier for us to untangle, in the public's eyes, the deliberately conflated projection of extremist sickos being one and the same as the vast majority of very reasonable, albeit very determined, ME/CFS advocates.

 

[Robert 1973]

Those quotes from Wessely are shocking, not because he claims to have been threatened by 2 people, which is obviously a bad thing, but because he attributes to a whole group phrases like ' sulphurous, vicious, horrible'.

I am no defender of Wessely's views but I do believe in the importance of accuracy when criticising these people. To me, it is unclear from the quote or the article whether he is referring only to those he alleges have threatened him or to the whole patient population, when he refers to "these people". However, the ambiguity is telling in itself, as is the constant emphasis on the alleged actions of a tiny number of people.

If would be refreshing if we could hear 1% as much from SW about the suffering of patients as we do about what he alleges he endures so heroically.

 

[Invisible Woman]

It would then be much easier for us to untangle, in the public's eyes, the deliberately conflated projection of extremist sickos being one and the same as the vast majority of very reasonable, albeit very determined, ME/CFS advocates.

It's a nice idea, but it would put the whole violent, militant, patients who are in denial in the fore front of the public eye again. Especially, if one has influence in the media.

Try to deny it and you add publicity to the claims. Let it stand and it's assumed they are true. Typical of their tactics.

 

[Robert 1973]

And the otherone that appears to be scientific because it was published in a journal, is actually a piece of journalism, published by a freelance journalist.

I just looked him up. Nigel Hawkes (who wrote the BMJ commentary which Petrie and Weinman reference) "was director of Straight Statistics, a campaign group for the honest presentation and use of statistical data" according to: https://www.raconteur.net/contributors/nigel-hawkes It would be interested to get his take, and that of Straight Statistics, on PACE now.

 

[lilpink]

Nigel Hawkes

http://www.margaretwilliams.me/2011/significance.pdf

http://www.margaretwilliams.me/2016/pace-trial-did-not-go-unchallenged.pdf

 

[Stewart]

I still don't understand why Wessely hasn't been " called" on these allegations of repeated abuse by patients. Whenever he or his theories are in difficulties, out come statements like this about patients.

But Prof Chalder could not name any instance of abuse to her or her colleagues ( other than one instance of heckling by one person) when under oath at the tribunal. I seem to remember the Countess of Mar recording in a letter that there was no abuse by patients, using this as evidence, and I don't remember him challenging this.

Why isn't Wessely called on to "put up" or " shut up".

It does make you wonder if maybe this should be an area of focus? We in PR would be more than happy (I would sincerely hope) for the exposure of people making serious death/harm threats to anyone (and I do mean anyone); quite apart from the fact such things are just plain wrong/illegal/immoral (and drags you down to their level), it also - as we know so well - provides fuel to those who seek to tar all ME/CFS advocates with the same brush.

It would then be much easier for us to untangle, in the public's eyes, the deliberately conflated projection of extremist sickos being one and the same as the vast majority of very reasonable, albeit very determined, ME/CFS advocates.

The thing is Simon *has* been called upon to 'put up or shut up' many times - but he simply ignores these inconvenient, insolent demands and goes on repeating his unevidenced allegations to unquestioning audiences (friendly journalists like Nigel Hawkes, the Sense About Science mob, etc). As long as his claims continue to get unquestioning media coverage he'll feel free to go on making them. All we can do is continue to push back on this point and repeat the demand for evidence every time these claims are made - and hope that sooner or later someone in the media takes up that demand with him.

As far as I can see the 'harassment from dangerous extemists' angle was something that the SMC cooked up in the immediate aftermath of PACE's publication, as a means of silencing criticism when it looked like the narrative was in danger of spiralling away from them. You only have to look at their own comments across a few months of 2011 to see how quickly - and dramatically - their story changed:

Michael Sharpe: So I think it’s very important to remember that if you go out there to the clinics that most patients with chronic fatigue syndrome, all they want is the evidence for what they have to do. There is parallel to that, a very vociferous series of websites and so on, it’s not really the same world as the ordinary patient coming to the clinic. They have been quite hostile in many ways to the findings of the trial and unfortunately also to the people who’ve undertaken the trial and collaborated with the trial.

Q: And when you say hostile to individual members of the research team, what do you mean?

Michael Sharpe: I think it’s well known it’s not uncommon in this field and it isn’t by any means restricted to this trial or to us but people who produce findings which are not the findings that are desired we see unpleasant emails and vilification on the internet and so on.

That was Sharpe speaking to ABC National Radio on 18th April 2011, and at that point 'hostility' to the trial was nothing more than "unpleasant emails and vilification on the internet and so on". By the 22nd June, when the Hawkes article was published in the BMJ, the PACE team were alleging death threats, unnecessary complaints to employers and the GMC, 'vexatious' FOI requests and libellous comments. However Hawkes specificallly pointed out in the article that "the campaigners have stopped short of the violent activities of the animal rights groups".

Not for long though. By August 21st The Observer was reporting "According to the police, the militants are now considered to be as dangerous and uncompromising as animal rights extremists." Note that there is nothing in the article to suggest that the police made this claim or that the reporter even spoke to them. By this point the allegations of "death threats" had been joined by claims that researchers had been assaulted in the streets and that Sharpe had been stalked by a woman with a knife - something that was apparently so unmemorable that it obviously slipped his mind when ABC Radio asked him about 'hostility' only a few months earlier.

There was, of course, no evidence presented at the time to support any of these allegations - and as we now know from the Tribunal judgement, the PACE team were subsequently unable to produce any evidence when legally required to do so. Furthermore Trudie Chalder admitted during the hearing that "unpleasant things have been said to and about PACE researchers only, but that no threats have been made either to researchers or participants" (page 36 of the Tribunal decision). So in other words we're back to the "unpleasant emails and vilification on the internet" that Sharpe spoke about in April 2011, before they upped the ante and started throwing around unevidenced - and apparently untrue - allegations.

But of course, the 'harassment' narrative is now firmly established in the minds of the media and the public even if there isn't actually any substance to it, so from their perspective - job well done.

 

[Chrisb]

As far as I can see the 'harassment from dangerous extemists' angle was something that the SMC cooked up in the immediate aftermath of PACE's publication, as a means of silencing criticism when it looked like the narrative was in danger of spiralling away from them.

I think it was found that Wessely was making these vague allusions as long ago as 1993 in the Elliot Slater lecture when he said, if his lecture notes are accurate, "hysteria, the mention of the word in the context of ME brings me palpitations and makes me worried about the safety of my family....."

See, it is not only he who is in danger, but also his family. Who from is a complete mystery. He might wish to clarify the matter. No doubt the risks increased with every retelling of the story to admiring disciples.

 

[user9876]

I am no defender of Wessely's views but I do believe in the importance of accuracy when criticising these people. To me, it is unclear from the quote or the article whether he is referring only to those he alleges have threatened him or to the whole patient population, when he refers to "these people". However, the ambiguity is telling in itself, as is the constant emphasis on the alleged actions of a tiny number of people.

If would be refreshing if we could hear 1% as much from SW about the suffering of patients as we do about what he alleges he endures so heroically.

The way his statements work is he always qualifies it but in a way that it smears all patients and this comes up in headlines and what others say. I think that is intentional because it has been going on years and he has done nothing to correct the perceptions he creates.

He also puts words into patients mouths that are not representative of what people believe - particularly the meme that patients don't want CBT because of the stigma of mental illness. Patients don't want it because it doesn't work and can make people worse. Post Wessely people with ME suffer far more stigma than say people with depression of bi-polar disorders who get wide spread celebrity support. This is repeated again in this paper by people who make a living out of not listening to patients but telling patients what to do.

 

[user9876]

I just looked him up. Nigel Hawkes (who wrote the BMJ commentary which Petrie and Weinman reference) "was director of Straight Statistics, a campaign group for the honest presentation and use of statistical data" according to: https://www.raconteur.net/contributors/nigel-hawkes It would be interested to get his take, and that of Straight Statistics, on PACE now.

He also wrote a piece slagging patients off for daring to ask for data and presenting a re-analysis of the recovery data. He claimed Alem was unavailable for comment when he failed to try to contact him. But the question should be why did the BMJ hire him to write a nasty article about patients.

 

[user9876]

I think it was found that Wessely was making these vague allusions as long ago as 1993 in the Elliot Slater lecture when he said, if his lecture notes are accurate, "hysteria, the mention of the word in the context of ME brings me palpitations and makes me worried about the safety of my family....."

See, it is not only he who is in danger, but also his family. Who from is a complete mystery. He might wish to clarify the matter. No doubt the risks increased with every retelling of the story to admiring disciples.

He would never make such comments about any other illness. It would be really frowned upon to make such comments say about someone with schizophrenia.

I do think his language is similar to extremists peddling race hatred.