BPS attempts at psychologizing Long Covid

[chrisb]

There have been references to William Sargant. It is unclear how reliable his writings were. Apparently when he retired in 1972 he took with him, and destroyed, all his patients' records. It may be entirely coincidental that that was the year Dulles (EDIT I wrote Dulles, but meant Helms) and Gottlieb are said to have destroyed their files relating to MK Ultra.

 

[Mike Dean]

https://en.wikipedia.org/wiki/William_Sargant
"His ambition to be a physician was thwarted by a disastrous piece of research and a nervous breakdown, after which he turned his attention to psychiatry."
Says it all, really.

 

[rvallee]

From Dr. Marc-Alexander Fluks:
Press release Hans Knoop et al.: CBT for post-covid-19 fatigue.

Dutch,
https://www.amc.nl/web/nieuws-en-verhalen/actueel/actueel/nog-steeds-moe-na-covid.htm

English,
https://translate.google.com/transl...n/actueel/actueel/nog-steeds-moe-na-covid.htm

I guess they will be very puzzled by the plurality, if not majority, of patients who will tell them that they don't have chronic fatigue. Or will they select only for people with fatigue, essentially ignoring all other symptoms. Which would make it a "study" strictly on fatigue and nothing else, which has been done many times before and is thus entirely pointless. Much confusion will be had over the difference between fatigue and PEM, which they have absolutely no clue about.

Are they generically "studying" fatigue and thus exclude most patients (since despite being the most common symptom, it is not by much), meaning this has little to do with post-Covid, or are they strictly studying fatigue in Covid, which again would be puzzling since too many do not report significant fatigue, but rather PEM. But one thing for sure they can't be "studying" post-Covid itself since by focusing on fatigue and nothing else by definition they miss most of the illness. So at best it's a subset, one that will tell us nothing but keeps quacks employed, I guess.

It's very foolish for them to expose their incompetence this way but at least it will backfire spectacularly. This stuff has dominated only because no one else had funding to do anything else so at least they will be a minor side-show attraction at best, most likely a laughing stock if it gets enough visibility in the Long Covid community.

 

[dave30th]

If they actually cared about post-viral illnesses, they would have already have a system in place to study the epidemiology and immune correlates prospectively. We have been asking for this for years but they failed. The best we have is one of our own (Lenny Jason) who has repurposed his university student study of post-viral illness.

I wondered why this didn't happen after the Dubbo studies. there was obviously much more to learn. I'm also curious if there are any other pre-existing cohort studies like Jason's that are being repurposed for coronavirus and post-Covid symptoms. I wrote about Jason's study here: https://www.statnews.com/2020/09/11/persistent-symptoms-after-covid19-hard-to-study/

 

[boolybooly]

I wondered why this didn't happen after the Dubbo studies. there was obviously much more to learn. I'm also curious if there are any other pre-existing cohort studies like Jason's that are being repurposed for coronavirus and post-Covid symptoms. I wrote about Jason's study here: https://www.statnews.com/2020/09/11/persistent-symptoms-after-covid19-hard-to-study/

My guess would be study funding politics where post infectious CFS loses out to headline grabbers. But longcovid is a headline grabber so maybe its our chance to catch the wave.

 

[Amw66]

 

[Andy]

This appears to be a self-gaslighting episode by... the director of the Cochrane Sustainable Healthcare group. Incredible. The doublethink and obvious cognitive dissonance at reconciling a delusional worldview with a personal experience that invalidates it is... fascinating. This person hurts themselves in confusion. Doesn't necessarily show from parts I quoted but the author has Long Covid.


Minna Johansson: Caring for patients with long covid—a compassionate tightrope

https://blogs.bmj.com/bmj/2020/10/0...ts-with-long-covid-a-compassionate-tightrope/



I have no idea how those thoughts are reconciled. It's widely known that developing treatments is always based on trying to address a step in whatever pathways cause the disease state. Other than out of sheer luck, I don't think it's ever happened for an effective treatment to be developed without targeting the cause. Really bizarre. It is precisely to make treatments available that we do research. It is how it literally always works.

This is genuinely the first time I have seen the imaginary thought bubbles invented by BPS charlatans actually be expressed by a patient. Fascinating that those fake dialogues have been so internalized that even though they are utterly fake, this person cannot do anything but think about them, only because it is a popular trope from the physician side of things, not because it is relevant to the patient's needs.

It is not, in fact, sensible. It is, in fact, actually very silly. We know for a fact that this model is completely unrealistic from an economic perspective. It is massively expensive, on top of not delivering a damn thing. Anything that delivers nothing is always too expensive, but this is massively expensive.

These internal dialogues exist only in the mind of psychosomatic ideologues who think about this stuff for a living but lack a personal understanding.

This is frankly sad and actually feels abusive. What an incredible waste this ideology has created.

There is a great response to it in the comments below the blog.

I find this post exasperating, and it leaves me wondering if the poster underestimates her privilege. As a sufferer of a chronic condition myself, this exemplifies a few aspects of the problematic behaviour we patients face from doctors.

Firstly, a measured cause does trump an unmeasured one, as it confirms that the pathology is not imagined, as some medics believe. Furthermore, a measured cause enables biomedical researchers in trying to resolve the issue, supporting future patients to regain quality of life. These conditions have been known for a long time, but research has been crippled by the belief that the condition is not biological. Participating in research gives patients purpose, but also hope.

Secondly, and perhaps more significantly, the disability that these conditions cause often means that patients are unable to work. In the UK, and many other countries (though I do not know about Sweden), that severely diminishes the patient's income, their quality of life, and that of their dependents. How many people will be pushed into poverty because of this condition? Are we to tell a family which can no longer afford their rent or mortgage payments, or can no-longer buy their children's schoolbooks to simply "embrace the uncertainty"? Should doctors counsel patients that losing their home, career, financial stability and social life it is just part of the "joy inherent in living"?
...

http://disq.us/p/2cg1ef7

 

[NelliePledge]

Thanks for highlighting the response @Andy

well done ‘Peter White’ whoever you are excellent reply to Minna Johansson’s rose tinted view.

 

[rvallee]

Sleepless Nights, Hair Loss And Cracked Teeth: Pandemic Stress Takes Its Toll

https://www.npr.org/sections/health...-cracked-teeth-pandemic-stress-takes-its-toll

Throughout the pandemic, people who never had the coronavirus have been reporting a host of seemingly unrelated symptoms: excruciating headaches, episodes of hair loss, upset stomach for weeks on end, sudden outbreaks of shingles and flare-ups of autoimmune disorders. The disparate symptoms, often in otherwise healthy individuals, have puzzled doctors and patients alike, sometimes resulting in a series of visits to specialists with few answers.

I love that people claim magical powers like "knowing" that someone did not have Covid. Why don't we just skip the whole testing infrastructure and just use their superior magical powers? It's certainly not as if we know that the tests are unreliable and that many are asymptomatic or have so little symptoms they didn't think much of it. Oh, we do know that? Wow, this is awkward.

Although people often underestimate the influence of the mind on the body, a growing catalog of research shows that high levels of stress over an extended period of time can drastically alter physical function and affect nearly every organ system.

Yes, this nonsense is literally built on us and it's kind of twisted to use it on a similar problem that this nonsense was built on but holy crap does commitment escalate when it has to.

Data from FAIR Health, a nonprofit database that provides cost information to the health industry and consumers, showed increases in the percentage of medical claims related to conditions triggered or exacerbated by stress, such as multiple sclerosis or shingles. The portion of claims for the autoimmune disease lupus, for example, showed one of the biggest increases — 12% this year — compared with the same period last year (January to August).

It's not as if medical services had been interrupted during that time and still have not resumed to normal. No, must be a completely different thing happening. What about the influence of Jupiter, though? Can you prove it does not play a significant role? Must be it, then.

Shilpi Khetarpal, a dermatologist at the Cleveland Clinic, used to see about five patients a week with stress-related hair loss. Since mid-June, that number has jumped to 20 or 25. Mostly women, ages 20 to 80, are reporting hair coming out in fistfuls, Khetarpal says.

That's what happens when data are not properly recorded simply because people don't know to ask relevant questions. Hair loss has been very significant with Covid, including those with a positive test, hence absolutely no reason to bring "stress" in here, something that can't be tested for and is very often confused.

In Houston, at least a dozen patients have told fertility specialist Dr. Rashmi Kudesia they're having irregular menstrual cycles, changes in cervical discharge and breast tenderness, despite normal hormone levels.

That too. I saw lots of reports of abnormal menstruations from patients, still haven't seen any acknowledgement or recording of this relevant piece of data. You can't count when you don't know what questions to ask.

When the danger is over, the hormones return to normal levels. But during chronic stress, such as a pandemic, the body keeps pumping out stress hormones until it tires itself out. This leads to increased inflammation throughout the body and brain, and a poorly functioning immune system.

And yet lots of people who dismissed the pandemic got Long Covid. It's very easy to falsify these claims yet no one bothers because they want this answer to be true, they don't even want to risk falsifying it.

When it comes to chronic stress, seeing a doctor for stomach pain, headaches or skin rashes may address those physical symptoms. But the root cause is mental, medical experts say.

I love that this paragraph follows a previous paragraph that said "this is not in their head" and yet here they are saying it. When you make all the claims you can claim 100% accuracy if you don't care to check and simply assume you're always right.

 

[Snowdrop]

Another point on this quote:

Although people often underestimate the influence of the mind on the body, a growing catalog of research shows that high levels of stress over an extended period of time can drastically alter physical function and affect nearly every organ system.

That catalogue of research never sets out to prove that stress causes physical symptoms although it's always stated that way. the research inevitably presents a correlation. And then presumes stress as causative.

Stress is just an ordinary part of life. We struggle when things get difficult and we are stressed. Increased stress is not some action that comes at us out of the blue. When our body is physically stressed we also become psychologically stressed as we try to cope. That would be the body influencing the mind.

 

[rvallee]

This appears to be a self-gaslighting episode by... the director of the Cochrane Sustainable Healthcare group. Incredible. The doublethink and obvious cognitive dissonance at reconciling a delusional worldview with a personal experience that invalidates it is... fascinating. This person hurts themselves in confusion. Doesn't necessarily show from parts I quoted but the author has Long Covid.


Minna Johansson: Caring for patients with long covid—a compassionate tightrope

https://blogs.bmj.com/bmj/2020/10/0...ts-with-long-covid-a-compassionate-tightrope/



I have no idea how those thoughts are reconciled. It's widely known that developing treatments is always based on trying to address a step in whatever pathways cause the disease state. Other than out of sheer luck, I don't think it's ever happened for an effective treatment to be developed without targeting the cause. Really bizarre. It is precisely to make treatments available that we do research. It is how it literally always works.

This is genuinely the first time I have seen the imaginary thought bubbles invented by BPS charlatans actually be expressed by a patient. Fascinating that those fake dialogues have been so internalized that even though they are utterly fake, this person cannot do anything but think about them, only because it is a popular trope from the physician side of things, not because it is relevant to the patient's needs.

It is not, in fact, sensible. It is, in fact, actually very silly. We know for a fact that this model is completely unrealistic from an economic perspective. It is massively expensive, on top of not delivering a damn thing. Anything that delivers nothing is always too expensive, but this is massively expensive.

These internal dialogues exist only in the mind of psychosomatic ideologues who think about this stuff for a living but lack a personal understanding.

This is frankly sad and actually feels abusive. What an incredible waste this ideology has created.

Just for funsies and because it's still pretty relevant despite being silly: the article was posted on the /r/CovidLongHaulers sub-reddit. Did not impress much, as expected. No comments, no up-votes. Nobody cares about this dumb MUS woo.

Of course since the ideology is self-reinforcing this changes nothing, rejecting psychological processes is consistent with the belief system: heads they win, tails they win, no toss they win. The one thing that BPS fanatics truly can't wrap their heads around: that they have nothing of value to offer and this is why people don't think much of their crap.

It especially falls flat after lots of gaslighting. Weird how people don't like it when their life is ruined by made-up stuff. So weird. I'd say someone ought to research that but clinical psychology is not capable of introspection so it would probably end up with the conclusion that it reinforces the BPS model, somehow.

 

[Sean]

Nobody cares about this dumb MUS woo.

Until MUS starts getting shoved down their throats. These people have no idea what is coming.

 

[Arnie Pye]

Title : 'Long COVID' may affect multiple parts of body and mind, doctors say

Link : https://uk.reuters.com/article/us-h...ts-of-body-and-mind-doctors-say-idUKKBN26Z3AB

Author : Kate Kelland [A cheerleader for BPS if I remember correctly? Edit : And a cheerleader for the SMC too.]

LONDON (Reuters) - Ongoing illness after infection with COVID-19, sometimes called “long COVID”, may not be one syndrome but possibly up to four causing a rollercoaster of symptoms affecting all parts of the body and mind, doctors said on Thursday.

Note paragraph 2 - my emphasis:

In an initial report about long-term COVID-19, Britain’s National Institute for Health Research (NIHR) said one common theme among ongoing COVID patients - some of whom are seven months or more into their illness - is that symptoms appear in one physiological area, such as the heart or lungs, only to abate and then arise again in a different area.

Note paragraph 3 - my emphasis:

“This review highlights the detrimental physical and psychological impact that ongoing COVID is having on many people’s lives,” said Dr Elaine Maxwell, who led the report.

Note final paragraph - my emphasis:

“While this is a new disease and we are learning more about its impact..., services will need to be better equipped to support people with ongoing COVID, as emerging evidence is showing there are significant psychological and social impacts that will have long term consequences,” the report said.

So, in one short article Long Covid has gone from being a physiological problem to being a psychological and social one.

 

[Leila]

I wonder how in 1 or 2 yrs things will be like amongst pwLC:

If there will be a divide between the ones that have detectable organ damage that either really does explain their symptoms or at least gives them some proof to health care providers, family, employers etc.

And then the ones without organ damage that will be sent away by everyone with their MUS.

Like splitting survivors in 1st and 2nd class categories.

I think it'll depend on how the health care system will address LC in the near future and how much space the BPS approach will be given.

 

[Kalliope]

Long covid hasn't been mentioned much in Norwegian media, but today the local newspaper Fædrelandsvennen has an article about two hospitals wanting to look closer at patients "that feel they don't get completely well again after having had covid-19".

The plan is to test and map more than 1 000 participants on a regular basis the next three years. The goal is to learn more about those who tested positive for Covid-19, about immunity, long term consequences of the infection that are traceable, and which factors that may have led to increased risk of infection.

Leader of the research project is neurologist Randi Eikeland (a not very popular doctor who also works with tick born diseases).

According to the article Henrik Vogt said last week during a seminar on protection control, that the consequence can be one of the most expensive and wide reaching problems we have today and will continue to have after the pandemic.

He continues (google translated):

- We see that long covid is the subject of some mystification and exceptionalism. By that I mean that one disregards the knowledge one already has about postviral syndromes, says Vogt, and refers to the fact that it is not unknown that one can get fatigue syndrome with many symptoms after a viral disease.

He reminds that the brain in fear of a symptom is not only able to amplify the symptom, if it is present, it is also able to create and prolong it.

- I do not mean by this that fear, expectation, symptom focus or persistent stress explains the whole symptom picture in everyone after covid-19. But when the research is to start now, it is important that it also sheds light on the fact that symptoms can arise and be exacerbated by fear and belief that they are there, he says.

Full article:
Færdrelandsvennen Norske forskere kartlegger symptomer og plager etter covid-19
google translation: Norwegian researchers map symptoms and ailments after covid-19

 

[chrisb]

I suppose it is disrespectful to ask for the evidence that the brain is in fear of a symptom or even what that could possibly mean.

EDIT they could do with also studying a further group with similar symptoms commencing at the same time who never had a positive test.

 

[boolybooly]

Does this guy have BPS connections?

There is zero evidence for this bunkum, it is made up handwaving and deserves to be challenged and debunked.

Its the same old problem of denying what it is, then inventing a convoluted psychological theory, based entirely on projection of fantasy, to explain something simple like persistent virus which is well known clinically but as yet not recognised by the medical political establishment.

This is why it is so important longcovid phenomena are empirically quantified so people like this will shut up.


I have said before and will say again as many times as it takes, I can prove I have recurrent virus with empirical evidence from multiple NHS PCR tests and my own dated photographs of lesions documenting >10 episodes in a single year. Yet the medical establishment at first entirely denied it was possible and it took >30 years for my GP to accept it was, with only this one virus mind you but my experience tells me it is the canary in the coal mine.

Medical dogma on viral persistence is stuck in the dark ages. Look at AIDS for goodness sake, HIV knocks out the immune system and other pathogens proliferate, we already know its not alone in evolving that kind of capability, there is such a strong selection pressure for immunoevasion, it stands to reason viruses will evolve to do this. I have had ample subjective evidence that other viruses are recurring due to some kind of induced immune dysfunction in my own condition, possibly related to EBV in my late youth. Leonard Jason and others presumably recognise the syndrome but there is noone out there who can explain what is going on.

We do so need more careful empirical investigations and less off the cuff made up stuff.

 

[Invisible Woman]

From the quote in @Kalliope 's post above

But when the research is to start now, it is important that it also sheds light on the fact that symptoms can arise and be exacerbated by fear and belief that they are there, he says.

What he doesn't say is that the symptoms are usually exacerbated by the therapists fear and beliefs & not the patients.

Especially, in the early years before a patient learns better they are very trusting of their doctors & have a lot of faith in what they are told.

The doctors' abnormal illness fears (that they are clueless and incapable of being open and honest about that) and beliefs push patients down treatment paths that can cause both physical and psychological harm.

I concede that Vogt is a very committed and talented man. It's just a shame his talent is to grasping the wrong end of the stick and being absolutely committed to never letting it go.

 

[Esther12]

We see that long covid is the subject of some mystification and exceptionalism. By that I mean that one disregards the knowledge one already has about postviral syndromes, says Vogt, and refers to the fact that it is not unknown that one can get fatigue syndrome with many symptoms after a viral disease.

All of that amazing & robust knowledge we have about post-viral syndromes... like Vogt's collection of recovery stories? Wyller's great work on music CBT?

It's pretty amazing to me that anyone can still take Vogt seriously, but it seems that a lot of people want to ignore the problems with his work.

Sadly I can't understand his Norwegian lecture:

 

[rvallee]

Long covid hasn't been mentioned much in Norwegian media, but today the local newspaper Fædrelandsvennen has an article about two hospitals wanting to look closer at patients "that feel they don't get completely well again after having had covid-19".

The plan is to test and map more than 1 000 participants on a regular basis the next three years. The goal is to learn more about those who tested positive for Covid-19, about immunity, long term consequences of the infection that are traceable, and which factors that may have led to increased risk of infection.

Leader of the research project is neurologist Randi Eikeland (a not very popular doctor who also works with tick born diseases).

According to the article Henrik Vogt said last week during a seminar on protection control, that the consequence can be one of the most expensive and wide reaching problems we have today and will continue to have after the pandemic.

He continues (google translated):

- We see that long covid is the subject of some mystification and exceptionalism. By that I mean that one disregards the knowledge one already has about postviral syndromes, says Vogt, and refers to the fact that it is not unknown that one can get fatigue syndrome with many symptoms after a viral disease.

He reminds that the brain in fear of a symptom is not only able to amplify the symptom, if it is present, it is also able to create and prolong it.

- I do not mean by this that fear, expectation, symptom focus or persistent stress explains the whole symptom picture in everyone after covid-19. But when the research is to start now, it is important that it also sheds light on the fact that symptoms can arise and be exacerbated by fear and belief that they are there, he says.

Full article:
Færdrelandsvennen Norske forskere kartlegger symptomer og plager etter covid-19
google translation: Norwegian researchers map symptoms and ailments after covid-19

Really weird to post his contrarian nonsense. Do they interview flat Earthers about astronomy? It makes for great click bait journalism but is a terrible disservice.

One of the odd consequences of Covid is that Henrik will escape the experience of being booed in person, if he said those things with Long Covid people present. I seriously hope this gets studied one day. It's so incredible to have people at this level of delusion actually being taken seriously. This is really what gets me, that anyone takes this junk as if it's credible.