Guardian: Long Covid is very far from ‘all in the mind’ – but psychology can still help us treat it - by Carmine M Pariante, April 2021

[Andy]

Trial By Error: In Guardian Column, Professor Pariante Parrots Standard Biopsychosocial Nonsense

"...
Professor Pariante’s new piece appears to be part of an ongoing campaign seeking to prevent the unraveling of the biopsychosocial paradigm for ME/CFS–and by extension for Long COVID. As is usual for this group, Professor Pariante reassures us that patients’ symptoms are “real” and should be taken seriously. But he undermines that message by suggesting that patients with ME/CFS—or CFS/ME, as he calls it—reject psychologically oriented interventions because they don’t fully appreciate the relationship between mental and physical health.

Professor Pariante should know better than to parrot such silliness. Perhaps he needs to spend more time listening to patients’ concerns and less to the theoretical blatherings of his fellow campaigners. No one seriously disputes that emotional and psychological states can influence how we experience symptoms and disease. That is a straw-person argument. At issue is the quality of the research behind the claims being made. As has been documented over and over, the research on cognitive behavior therapy and its companion, graded exercise therapy, for ME/CFS is fraught with disqualifying flaws and does not prove what it claims to prove. Patients frown on these interventions because the studies are crap—not because of prejudice against psychiatry or psychological interventions. Rejecting CBT as a treatment for ME/CFS cannot reasonably be construed as a denigration of people with mental illness.
..."

https://www.virology.ws/2021/05/01/...te-parrots-standard-biopsychosocial-nonsense/

 

[Colin]

Trial By Error: In Guardian Column, Professor Pariante Parrots Standard Biopsychosocial Nonsense

The above letter is by the redoutable Doctor David Tuller.

 

[Jonathan Edwards]

Hilarious. I've not dressed like that for years! Mind you, they've nailed that weight-of-the-world look.

I have just been looking over the draft for my back-burnered book on PACE written about 2 years ago. I was explaining Trish's rhyme about cardigans:

Psychotherapists were less formally dressed but the mental image was of a pleasant young woman with perhaps a powder blue cardigan, maybe a loose neckscarf to emphasise informality and hair lightly tied back to look a bit professional.

The Guardian must be psychic, unless they have been hacking my computer.
I have to say that the colour of the ribbed top in the photo is a bit indeterminate though.

 

[DokaGirl]

As per another post I made, the BPS brigade seem to vigorously object to any denigrating of mentall illness, and yet they appear to support policies whereby those with this label are only supported by disability coverage for a maximum of 2 years. We know, if it can be seen to be proved that X person has a mental health disorder, and not a physical health disorder, their support is pulled at a maximum of 2 years.

This appears to downgrade the importance and relevancy of mental health, as opposed to physical health. And yet, mental health is the field championed by the BPS Movement.

As well, the BPS Movement denigrates the very people they label as suffering from mental health issues, as opportunists out for secondary gains.

The disdain is also heaped on these "mental health" sufferers with the suggestion or guidance that biomedical testing should merely cover the basics.

(Interesting that policies would essentially indicate many mental health issues can be cured in 2 years or less. I don't know, but there must be some undisputed objective evidence that says this is so. However, real world observation might say otherwise.)

 

[Esther12]

Trial By Error: In Guardian Column, Professor Pariante Parrots Standard Biopsychosocial Nonsense

"...
Professor Pariante’s new piece appears to be part of an ongoing campaign seeking to prevent the unraveling of the biopsychosocial paradigm for ME/CFS–and by extension for Long COVID. As is usual for this group, Professor Pariante reassures us that patients’ symptoms are “real” and should be taken seriously. But he undermines that message by suggesting that patients with ME/CFS—or CFS/ME, as he calls it—reject psychologically oriented interventions because they don’t fully appreciate the relationship between mental and physical health.

Professor Pariante should know better than to parrot such silliness. Perhaps he needs to spend more time listening to patients’ concerns and less to the theoretical blatherings of his fellow campaigners. No one seriously disputes that emotional and psychological states can influence how we experience symptoms and disease. That is a straw-person argument. At issue is the quality of the research behind the claims being made. As has been documented over and over, the research on cognitive behavior therapy and its companion, graded exercise therapy, for ME/CFS is fraught with disqualifying flaws and does not prove what it claims to prove. Patients frown on these interventions because the studies are crap—not because of prejudice against psychiatry or psychological interventions. Rejecting CBT as a treatment for ME/CFS cannot reasonably be construed as a denigration of people with mental illness.
..."

https://www.virology.ws/2021/05/01/...te-parrots-standard-biopsychosocial-nonsense/

rather than an organic disease.

I didn't understand this as Pariante didn't opine that patients were suffering from anything "rather than an organic disease", and reiterated that all symptoms and disorders should be seen as 'organic', eg:

"I can assure you that every symptom and every disorder, regardless of whether it is called mental or physical, is characterised by measurable biological changes in the body and in the brain. We may not know yet if these changes are the cause of the symptoms, but these biological changes are very real even if we cannot fully understand them."

I feel like that 'rather than' goes against the argument of the rest of the blog?

 

[dave30th]

I didn't understand this as Pariante didn't opine that patients were suffering from anything "rather than an organic disease", and reiterated that all symptoms and disorders should be seen as 'organic', eg:

"I can assure you that every symptom and every disorder, regardless of whether it is called mental or physical, is characterised by measurable biological changes in the body and in the brain. We may not know yet if these changes are the cause of the symptoms, but these biological changes are very real even if we cannot fully understand them."

I feel like that 'rather than' goes against the argument of the rest of the blog?

you could be right on that. I take what he says to be really just a smokescreen for saying these are essentially psychological even if they have some biological substrates--it's the "to be sure" part of many articles, where you give a nod to the other side but don't really mean it. But perhaps it's worth revisiting that last clause anyway.

 

[Lucibee]

I take what he says to be really just a smokescreen for saying these are essentially psychological even if they have some biological substrates

I think it's much more complex than that though. Biological psychiatry seems to fill an odd niche between neuropsychiatry, neuroendocrinology, genetics, and the other academic psychological professions. It's not helped by its origins (distinctly Freudian). On the surface, it does seem they are making inroads into discovering molecular genetic links with various conditions and has had some success with uncovering potential biomarkers. But then they go and ruin it all by retaining associations with "childhood trauma" and personality determinants etc, as the underlying causes for the disrupted neurobiological pathways (these things often run in families after all). :eyeroll:

It's one to watch closely and not dismiss out of hand. Even once mechanisms are found, there is still the tendency for some to believe that changing one's thoughts and behaviour can change your biology too (and thus provide a "cure"). Why else does LP "work"?

 

[Hoopoe]

What they say: your symptoms are very real, ME/CFS is not all in the mind.

What they do: design clinical trials to test whether changing the patient's thoughts and beliefs about symptoms will lead to a recovery from the illness. Then, when the results are poor, they switch outcomes to obtain the positive results they wanted.

Sharpe also authored a textbook where it's explicitly claimed that ME/CFS is perpetuated by thoughts and behaviour.

It's clear that they believe one thing and say something different to the public.

 

[benji]

Sharpe also authored a textbook where it's explicitly claimed that ME/CFS is perpetuated by thoughts and behaviour.

.

That’s interesting, do you know the title?

 

[Peter T]

Even once mechanisms are found, there is still the tendency for some to believe that changing one's thoughts and behaviour can change your biology too (and thus provide a "cure")

Prof Crawley explicitly argues this in press interviews, which possibly why she is also an advocate for the Lightning Process, as well as for CBT/GET and now ACT:

"Crawley said she does not consider CFS a psychological illness. If it were, she said, more young patients would be expected to develop low mood or anxiety. But that does not mean psychological therapy will not help, she said."

https://www.theguardian.com/society...-syndrome-treatment-trial-success-netherlands

The approach regularly receives criticism from some activists who argue it treats chronic fatigue syndrome as a disease of the mind.

Prof Crawley said: "A teenager might say, 'You are just trying to change my sleep', but do you know how much biology you actually change?

"Children who come to my clinic have low cortisol [stress hormone] levels in the morning, that is why they feel so terrible; by changing their sleep, we reverse that.

"The stuff we are doing is not a pill, but it might as well be."

http://www.bbc.co.uk/news/health-37822068

"A teenager might say, 'You are just trying to change my sleep', but do you know how much biology you actually change?

"Children who come to my clinic have low cortisol [stress hormone] levels in the morning, that is why they feel so terrible; by changing their sleep, we reverse that.

"The stuff we are doing is not a pill, but it might as well be."


http://www.bbc.co.uk/news/health-37822068

Professor Crawley said: “There is plenty of evidence now to say this is a real illness. But just because this is not a psychological illness, that does not mean psychological therapy cannot help - that is true throughout medicine."

https://www.scotsman.com/news/new-chronic-fatigue-syndrome-treatment-trialled-1-4273699

 

[Wonko]

'I do not consider your comatose kitten to be a car - but that does not mean that opening it up to inspect/change it's spark plugs, and filling it with petrol won't work.'

Can she really be so stupid as to not see how inappropriate delivering treatment that she herself has said can't address the cause of the problem?

 

[dave30th]

I think it's much more complex than that though.

thanks for that context. very helpful.

 

[TigerLilea]

I wonder how many people with ME or fibromyalgia or IBS are tested for things like nutrient deficiencies or anaemia, or various forms of arthritis or lupus, or cancer? There is nothing to stop a person with ME from developing rheumatoid arthritis or lupus or cancer or hypothyroidism or hyperthyroidism. But how many ever get these conditions diagnosed and treated promptly?

Maybe it's because I live in Canada, but I have been tested for all of these things. In fact, I was tested when I first went into my doctor 30 years ago complaining about the fatigue that was taking over my life. My doctor wanted to rule out everything before she diagnosed me with ME/CFS. I was tested again two and a half years ago when I complained about something not being right. The testing showed that I had seven different things wrong with me, including cancer and a couple of different autoimmune disorders.

 

[Woolie]

The irony is that Pariente is really repeating Knoop and White when they said that CBT is really working as a placebo. The problem with that for White was that he claimed that placebos had no effect on ME, but that cannot right if PACE showed CBT effective and it is a placebo.

But the key thing is that the definition of a placebo is that it makes people say they are better but for reasons that have nothing to do with any mechanism that is specific to the modality of treatment. In other words if CBT is a placebo then it doesn't need to be CBT. A blue pill would do, or jumping on a piece of paper or cold baths.

Yes, you can't have your cake and eat it too. If you take the view that psychological therapies operate by just increasing people's expectations of improvement, then you cannot claim any superiority over any other form of bullshit that does the same, whether its shamans, witchdoctors, crystals, magic water, pyramids or miracle elixirs. If that's the case, then why not jsut cut out the middle man and send everyone to their local purveyor of woo? Or better still, recruit some really good used car salesmen or pyramid scheme pushers, because those guys really know how to raise expectations without any real basis.

The placebo effect is the worst justification for psychological treatments that I have ever heard.

 

[JohnTheJack]

The irony is that Pariente is really repeating Knoop and White when they said that CBT is really working as a placebo. The problem with that for White was that he claimed that placebos had no effect on ME, but that cannot right if PACE showed CBT effective and it is a placebo.

But the key thing is that the definition of a placebo is that it makes people say they are better but for reasons that have nothing to do with any mechanism that is specific to the modality of treatment. In other words if CBT is a placebo then it doesn't need to be CBT. A blue pill would do, or jumping on a piece of paper or cold baths.

And in fact they showed this in the SMILE trial. They used the same flawed trial design as they had for PACE to test outright woo and found it too had the same effect: it didn't change the underlying illness but succeeded in persuading a small number of patients to say that they felt a bit better.

 

[JohnTheJack]

Reminds me of something James Coyne said i.e. [from memory] you can use psychological therapies to help someone deal with the fact they have e.g. got terminal cancer but it's not a treatment for the underlying disease.

Coyne likes to quote this study.

Active Albuterol or Placebo, Sham Acupuncture, or No Intervention in Asthma
https://www.nejm.org/doi/full/10.1056/nejmoa1103319

RESULTS
Among the 39 patients who completed the study, albuterol resulted in a 20% increase in FEV1, as compared with approximately 7% with each of the other three interventions (P<0.001). However, patients' reports of improvement after the intervention did not differ significantly for the albuterol inhaler (50% improvement), placebo inhaler (45%), or sham acupuncture (46%), but the subjective improvement with all three of these interventions was significantly greater than that with the no-intervention control (21%) (P<0.001).

CONCLUSIONS
Although albuterol, but not the two placebo interventions, improved FEV1 in these patients with asthma, albuterol provided no incremental benefit with respect to the self-reported outcomes. Placebo effects can be clinically meaningful and can rival the effects of active medication in patients with asthma. However, from a clinical-management and research-design perspective, patient self-reports can be unreliable. An assessment of untreated responses in asthma may be essential in evaluating patient-reported outcomes.

 

[DigitalDrifter]

Coyne likes to quote this study

I think the BPS Brigade should use sham CBT in their trials in which patients are told if they don't answer positively they won't get better.

Actually scrap that, their research shouldn't be funded at all, it's a waste of money.

 

[rvallee]

I think the BPS Brigade should use sham CBT in their trials in which patients are told if they don't answer positively they won't get better.

Actually scrap that, their research shouldn't be funded at all, it's a waste of money.

There has been hundreds of trials already. That's what I don't get about people asserting the research must continue. It's done, there is nothing left to do, so much that for the last decades the very same things are "tried" over and over again, without any changes. There has not been any breakthroughs since, no technology has been developed, no new understanding has come to the fore.

They don't even use any technology at all, other than to diddle faster with their spreadsheets. All of this could have been done a century ago, the only change would have been more laborious calculation. There is no real difference between applying CBT here or any other BS pseudoscience, the outcome is the same. We literally know this is the case. We even know it's the case that there is no difference between "super highly-trained specialists", whatever that means, and an actual smartphone app, or even a two-page pamphlet: they are equally useless.

I don't understand how that point doesn't settle everything. It has been tried, literally hundreds of times. Every time identical to every one before, because the distinctions are purely cosmetic, all style and no substance. That number alone screams quackery.

Exactly how many is enough? And how is it that this is the only thing exempt from the normal way of doing things? To try again and again hundreds of times over the very same thing with the same intent, often the same people, and the same methods, the same spin every time it fails and the same absurd claims every time they cherry-pick some BS statistical significance out of made-up numbers?

This is all performance. There is no research going on in CBT. The search is over, all it's built is this stage where people perform and claim "success" for the passage of time, at best. A threadmill for people who don't want to do real work, are OK with going in day after day doing nothing more significant than writing their own name on a piece of paper and doing nothing more.

All this personalization is asserted as good, when it's actually the very worst possible outcome. A "solution" where the solution is different every time. This is of no use whatsoever, it's the very same as no solution, all hustle and no oversight. None of this scales or even makes any sense.

PACE was supposed to be the definitive test. And still on and on it goes. Always the same, same as their predecessors and their own predecessors' before that. This is the real definition of madness: trying the same thing over and over again while not caring about the results.

 

[Barry]

Coyne likes to quote this study.

Active Albuterol or Placebo, Sham Acupuncture, or No Intervention in Asthma
https://www.nejm.org/doi/full/10.1056/nejmoa1103319

RESULTS
Among the 39 patients who completed the study, albuterol resulted in a 20% increase in FEV1, as compared with approximately 7% with each of the other three interventions (P<0.001). However, patients' reports of improvement after the intervention did not differ significantly for the albuterol inhaler (50% improvement), placebo inhaler (45%), or sham acupuncture (46%), but the subjective improvement with all three of these interventions was significantly greater than that with the no-intervention control (21%) (P<0.001).

CONCLUSIONS
Although albuterol, but not the two placebo interventions, improved FEV1 in these patients with asthma, albuterol provided no incremental benefit with respect to the self-reported outcomes. Placebo effects can be clinically meaningful and can rival the effects of active medication in patients with asthma. However, from a clinical-management and research-design perspective, patient self-reports can be unreliable. An assessment of untreated responses in asthma may be essential in evaluating patient-reported outcomes.

That in itself is extremely interesting. It is effectively demonstrating that placebo interventions , in that case, has reduced people's awareness of their asthma symptoms, and therefore feel themselves to be coping better. (Might CBT do similar?) Which on the face of it seems good. But I wonder if that is necessarily always safe? If an asthmatic person fails to recognise in time that they need to medicate, then surely that could be dangerous? Delaying such medication until the symptoms finally dominate, could mean that delay is dangerous.

In the context of ME/CFS it might also be the case that the risks from CBT and GET are not simply from people pushing too hard through their symptoms, but that the "treatment" reduces the patient's symptom awareness, and therefore shifts their symptom thresholds relative to their physical thresholds, even though their physical thresholds won't have changed. So treatments that mess with subjective warning mechanisms might well foster stressing physical limits more highly.

ETA: Reworded slightly for clarity.

Edit: Mistakenly implied CBT mentioned in the study Coyne referenced. Had it in my head that CBT likely has similar symptom-skewing effects; edited to correct that.

 

[JohnTheJack]

That in itself is extremely interesting. It is effectively demonstrating that CBT, in that case, has reduced people's awareness of their asthma symptoms, and therefore feel themselves to be coping better. Which on the face of it seems good. But I wonder if that is necessarily always safe? If an asthmatic person fails to recognise in time that they need to medicate, then surely that could be dangerous? Delaying such medication until the symptoms finally dominate, could mean that delay is dangerous.

In the context of ME/CFS it might also be the case that the risks from CBT and GET are not simply from people pushing too hard through their symptoms, but that the "treatment" reduces the patient's symptom awareness, and therefore shifts their symptom thresholds relative to their physical thresholds, even though their physical thresholds won't have changed. So treatments that mess with subjective warning mechanisms might well foster stressing physical limits more highly.

ETA: Reworded slightly for clarity.

Very good points I think, Barry.