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

[Mithriel]

He says that a trial "requires a comparison with a dummy treatment, so that our expectations, positive or negative, do not influence the results."

I thought a control group was needed to separate what would happen over time without the new treatment from the effect of the new treatment especially regression to the mean.

If they don't realise that it could explain the pace trial where they gave the absolute value for the improvement with GET without subtracting the value from the control group.

 

[FMMM1]

Seems to me a lot of self justifying waffle. Just because psychological therapy can help cancer patients cope doesn't mean they are treating the cancer. He's deliberately missing the point. There is not evidence that psychological therapies can treat ME/CFS itself, any more than that it can treat cancer.

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.

So in ME/CFS psychological therapies may be useful in helping you deal with your ill-health but they are not a treatment for the underlying illness. I'm reluctant to go that far* and it would be relatively easy to use objective measurements to see if the psychological therapy worked


*"There was no significant improvement on any of the [PACE] trial’s objective measures, such as numbers returned to work or levels of fitness". [https://journals.sagepub.com/doi/10.1177/1359105317703785]

 

[Grigor]

A blue pill would do, or jumping on a piece of paper or cold baths.

Whilst being on that paper don't forget to say STOP when you are experiencing symptoms.

 

[FMMM1]

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.

Yip and blue pills would be cheaper!

This suggests that the there was no (positive) response from CBT in PACE:
"There was no significant improvement on any of the [PACE] trial’s objective measures, such as numbers returned to work or levels of fitness."
https://journals.sagepub.com/doi/10.1177/1359105317703785

Still fits the "definition of a placebo is that it makes people say they are better---"!. So if you stick to unblinded studies, and only use questionnaires, then you get +ve results!

 

[Adam pwme]

Does Carmine still serve on the CMRC executive board?

 

[Jonathan Edwards]

Yip and blue pills would be cheaper!

Blue pills can be quite pricy!

 

[DokaGirl]

Not that I'm capable of writing a letter but having read a few responses to this sort of nonsense I find the best responses incorporate answers to anticipated further responses while addressing what has been said. Wording needs to anticipate leaving no room for wriggling around again with their slippery language.

Also, I'd like to point out -- again -- that when the BPS throw out the suggestion that we are erroneously thinking they are using therapies that are 'for the mind' and therefore it is us who are treating disease as a dualist concept (mind illness and body illness) . . .

They should remember that none of them have ever once raised the issue with insurance or government that "mind illness' or mental health as it's known should have parity in terms of the social assistance that is given to 'purely physical illness'. One might be inclined to ask why that is? If as they now keep repeating (and the patient community has never denied) physical and mental health / illness are all one and the same.

Yet despite even their best most (manipulated) robust figures for the efficacy of CBT they have NEVER shown 100% of people improve. So what of all those who do not?

Well the CBT cabal has worked hard to ensure that they are variously blamed for not benefiting, ignored by the medical establishment or gas-lighted for being mean to therapists who are just trying to help.

Excellent point @Snowdrop about parity of mental illness and physical illness regarding social assistance and disability insurance.

The BPS proponents often work assessing claimants for social service and private disability insurers. They seem to insist that mental illness should share the same importance as physical illness. And yet, companies they work for, private insurers, usually only deem mental illness important enough to receive 2 years of benefit coverage. Whereas, physical illness may be in line for longer coverage. It could follow that the very system BPS proponents work for stigmatizes mental illness by virtue of the fact there is often only 2 years benefit coverage for these claimants.

 

[Midnattsol]

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.

So in ME/CFS psychological therapies may be useful in helping you deal with your ill-health but they are not a treatment for the underlying illness. I'm reluctant to go that far* and it would be relatively easy to use objective measurements to see if the psychological therapy worked


*"There was no significant improvement on any of the [PACE] trial’s objective measures, such as numbers returned to work or levels of fitness". [https://journals.sagepub.com/doi/10.1177/1359105317703785]

In Norway if you are hospitalised for a psychiatric condition, you will lose a large chunk of your disability after a certain amount of time. This does not happen if you're hospitalised for a physical illness.

 

[DokaGirl]

So can we regard the therapists as placebos? I think so. With their status, and in the case of PACE, considerable government funding, those administering, as well as the researchers themselves would, or could engender hope/positive anticipation.

And on another aspect of this, after time and money invested with a practitioner, I'm personally reluctant to say their treatment is crap. One can anticipate push back even if the critique is more diplomatic. In a power imbalance, pwME receiving benefits would more likely be positive about the therapy. Especially given the status of the therapists and researchers.

 

[FMMM1]

He says that a trial "requires a comparison with a dummy treatment, so that our expectations, positive or negative, do not influence the results."

I thought a control group was needed to separate what would happen over time without the new treatment from the effect of the new treatment especially regression to the mean.

If they don't realise that it could explain the pace trial where they gave the absolute value for the improvement with GET without subtracting the value from the control group.

Did they do anything right in that study [PACE] -- they gave the absolute value for the improvement with GET without subtracting the value from the control group


EDIT - see @Jonathan Edwards comment:
"I don't think they did that in any meaningful sense. They stated the reported improvements in all groups. Both absolute and relative change were explicit - and both are relevant in interpreting a study. This is about the one thing that they did not get wrong - except perhaps maybe in press release gloss."

https://www.s4me.info/threads/guardian-long-covid-is-very-far-from-‘all-in-the-mind’-–-but-psychology-can-still-help-us-treat-it-by-carmine-m-pariante-april-2021.20332/page-2#post-341390

 

[MEMarge]

Does Carmine still serve on the CMRC executive board?

I think CMRC may be "morphing" as Stephen Holgate is stepping down - probably considering its role/direction/members for now.

 

[Sean]

Conversely, changes in lifestyle and behaviour, and psychological therapies (which work by challenging unhelpful ways we think about ourselves and world around us),

I think this contains the biggest flaw in their approach, and it is a biggie: The assumption that they have a superior insight into the broader world and its workings, that their training grants them some kind of sweeping objective God-like vision and understanding of the human experience and condition, that they are able to take into account all significant factors affecting human behaviour and make safe reliable definitive judgements. Worse, that they can do this in individual cases. It is one thing to claim it at the population level, but a whole new game to claim to be able to do it at the individual level.

It is an assumption they have to make to justify to themselves how they operate. But it is obviously nonsense, even when confined to their own field. It is impossible to do.

I mean, why bother with all this expensive scientific research into anything, when we can just ask a psychiatrist for the answer?

 

[Jonathan Edwards]

Did they do anything right in that study [PACE] -- they gave the absolute value for the improvement with GET without subtracting the value from the control group

I don't think they did that in any meaningful sense. They stated the reported improvements in all groups. Both absolute and relative change were explicit - and both are relevant in interpreting a study. This is about the one thing that they did not get wrong - except perhaps maybe in press release gloss.

 

[Hoopoe]

It is an assumption they have to make to justify to themselves how they operate. But it is obviously nonsense, even when confined to their own field. It is impossible to do.

It's even worse than this. Their belief system also includes the belief that negative feedback from patients can be safely ignored. After all, the illness is the result of negative thinking, therefore any negative feedback from patients is just a demonstration of the negative thinking that led to the illness.

 

[Lucibee]

This is where the power of placebo stuff comes from: Interview - All in the mind?
and here: Placebos: Honest Fakery

I don't doubt that it is possible to use "placebos" to help learn better coping strategies for pain etc, but it's hard work and it doesn't work for everyone.
It's also potentially counterproductive if it leads you to ignore important warning signs. That goes for mental health conditions too.

 

[Sean]

It's also potentially counterproductive if it leads to you ignore important warning signs.

This.

They are setting up the population and the health system to ignore the early non-specific warning signs of many serious disease processes.

It is going to be a catastrophe far greater than ME and Long Covid if it is not stopped, because it will affect a far greater range of health conditions. Increased morbidity and mortality will be the outcome.

The line was crossed when they started claiming that diagnoses of FND are now positive, not merely just default when nothing else can be found, and that emergency clinics should in effect triage for FND, et al.

It is very depressing stuff.

 

[Sean]

This point is particularly important in the context of CFS/ME and, more recently, long Covid. Offering lifestyle changes or psychotherapeutic approaches to these patients does not mean that their symptoms are “not real”. Medics routinely help cancer patients with these approaches every day, yet I never hear anyone accusing doctors of suggesting cancer is all in the mind.

Disingenuous, I'm sure he's intelligent enough to know exactly what the differance is. Cancer folks are not having their cancer treated with physchotheraputic approaches, they're having surgery and chemotherapy. M.e. folks are denied any treatments under the dogma that cbt, graded exercise will cure them. Furthermore the symptoms of M.E. and Long Covid mean these approaches can cause harm in these patients.

If anybody thinks we are too harsh in our criticism of this cabal, just take a look at how persistently they misrepresent this fundamental point.

Every. Fucking. Time.

They have no possible defence on this. They know exactly what they are saying, and how dishonest and misleading it is.

This decades long pattern of behaviour from them is why I have no respect for them whatsoever, and demand nothing less than their removal from all positions of authority and influence.

 

[Midnattsol]

This.

They are setting up the population and the health system to ignore the early non-specific warning signs of many serious disease processes.

It is going to be a catastrophe far greater than ME and Long Covid if it is not stopped, because it will affect a far greater range of health conditions. Increased morbidity and mortality will be the outcome.

The line was crossed when they started claiming that diagnoses of FND are now positive, not merely just default when nothing else can be found, and that emergency clinics should in effect triage for FND, et al.

It is very depressing stuff.

In one of my clinical courses, we worked on a case where the patient had serious liver disease. Turned out he had had "weird" bloodwork for years, but it wasn't until it became serious it was followed up on. You know, it was probably their normal despite coming back with vague system over and over again

 

[DokaGirl]

It's even worse than this. Their belief system also includes the belief that negative feedback from patients can be safely ignored. After all, the illness is the result of negative thinking, therefore any negative feedback from patients is just a demonstration of the negative thinking that led to the illness.

There seem to be never ending circles in BPS beliefs.

 

[DokaGirl]

This.

They are setting up the population and the health system to ignore the early non-specific warning signs of many serious disease processes.

It is going to be a catastrophe far greater than ME and Long Covid if it is not stopped, because it will affect a far greater range of health conditions. Increased morbidity and mortality will be the outcome.

The line was crossed when they started claiming that diagnoses of FND are now positive, not merely just default when nothing else can be found, and that emergency clinics should in effect triage for FND, et al.

It is very depressing stuff.

The denial of symptoms as real, is why I am concerned that symptoms related to a blood clot from a COVID shot will be, or have been dismissed.