BPS attempts at psychologizing Long Covid

[MSEsperanza]

I wonder if it's even simpler. That Vogt perhaps believes the way he experiences symptoms is the universal way to experience them.

How can anyone take a doctor seriously who equates every currently medically unexplained illness with his own suffering from tinnitus obviously accompanied by severe health anxiety or 'catastrophizing'?

Recovery Norge seems to collect a mixture of stories about overcoming health anxiety, about just naturally recovering from medically unexplained illness with time, about fluctuating symtoms with longer intervals of better health, and about developing an acceptance of one's illness/ symptoms and therefore reducing and adjusting activity levels, managing to receive social support and thus perceiving oneself less restricted and less ill etc.

I wonder what the proportions of those phenomena are within diverse patient populations, how transient they are and how they could be determined.

 

[Kalliope]

I have to admit I've done the same mistake I'm accusing Vogt for; assuming my own experience is universal.

When I got sick I was certain to soon bounce back as that was my experience from all previous infections. The fluctuating symptoms made it easier to fool myself. Every time I had a good day I was certain that the illness now was letting go. The bad days were just temporary bumps in the road.

It took me two years to start wondering whether this perhaps was something more long term.

When I eventually was diagnosed with ME, the doctor said he hoped I'd recover within four years, but I was sure it wouldn't take THAT long!

I would have needed help to convalescence, to learn not to push, to adapt the level of activities according to the level of symptoms. This is an experience I share with almost every ME patient I have talked with, so this has been a given normal for me.

Among friends with ME we advice each other to take it easy, to rest - this is the advice we ourselves need to be reminded of. Whenever we can do more without triggering PEM, we automatically do, no need for any reminders in that department.

I've just assumed everyone react to illness the same way, but the stories of Vogt, Garner and Recovery Norge are completely alien to me.

 

[Mithriel]

The simple fact is that tinnitus is an unpleasant nuisance, but not a serious disease. By his own description he overreacted very badly so thinking about it differently helped him. That is the way it works with a lot of things in life but it has no relationship with a disease like ME where the wrong treatment risks the patient spending the rest of their life in a wheelchair or worse, bedridden for years.

I have a certain sympathy, someone in distress is someone in distress no matter the cause but he is using his own trivial problem to assume everyone else's problem is equally trivial. (I had tinnitus quite badly, though maybe not as bad as his)

I never reacted to being ill the way Paul Garner did, chance would be a fine thing, my family did not believe in "lying down to illness" When I was told it was migraine I accepted it and assumed I was well in between what I now know are crashes. Anyway it was less tiring to act well than explain the neurological problems. If acting well and getting on with life were the cure I would not still be ill.

 

[rvallee]

I have to admit I've done the same mistake I'm accusing Vogt for; assuming my own experience is universal.

When I got sick I was certain to soon bounce back as that was my experience from all previous infections. The fluctuating symptoms made it easier to fool myself. Every time I had a good day I was certain that the illness now was letting go. The bad days were just temporary bumps in the road.

It took me two years to start wondering whether this perhaps was something more long term.

When I eventually was diagnosed with ME, the doctor said he hoped I'd recover within four years, but I was sure it wouldn't take THAT long!

I would have needed help to convalescence, to learn not to push, to adapt the level of activities according to the level of symptoms. This is an experience I share with almost every ME patient I have talked with, so this has been a given normal for me.

Among friends with ME we advice each other to take it easy, to rest - this is the advice we ourselves need to be reminded of. Whenever we can do more without triggering PEM, we automatically do, no need for any reminders in that department.

I've just assumed everyone react to illness the same way, but the stories of Vogt, Garner and Recovery Norge are completely alien to me.

I see some of those reactions from time to time on LC forums. They are rare, very highest maximum 5% and I'd say closer to 1%. And some of those reactions may be rational, based on a personal history of illness or economic precarity where even mild illness could be catastrophic. Most people react the usual way: change, exercise, eat well, cut coffee and alcohol, etc. All the obvious common sense things that BPS ideologues pretend is groundbreaking stuff no one thinks of yet almost everyone does.

Which is something that could easily be confirmed and is repeated often enough that I'm sure the BPS brigades are aware, I just don't know what they tell themselves to be so convinced that we don't do the things that are most obvious and most report doing. But it shows once more that evidence is completely irrelevant in evidence-based medicine. Inconvenient evidence is simply brushed aside or interpreted creatively. And with no accountability or oversight, nobody but us cares.

 

[mango]

Another Twitter thread with short video clips from SFAM's (the Swedish Association of General Practice) webinar October 2020:

Thread with seven clips from webinar on #longcovid from 15 October 2020. The @SFAMSverige association (general practitioners) is discussing.

"SFAM's purpose is to independently promote education, training, research and development in general practice."

1. Minna Johansson says #longcovid symptoms become more chronic than they need to be when there is a focus on biomedical causes in media and debate ->

2. Karin Ranstad says covid-19 has been kidnapped by a "biomedical narrative". It is an opportunity to be given a sick note. In the same way as amalgam poisoning and electromagnetic hypersensitivity. #longcovid will be used as a tool to be believed. ->

3. Gunnar Carlgren says that #longcovid symptoms may be due to where you are in life, or the culture of the time, which demands to have answers to everything here and now. ->

4. Lars Englund says that #longcovid, like "back pain" and exhaustion, is related to how you feel in life - a product of what you've been through, and fears. Risk that we get a new group like electromagnetic hypersensitivity, amalgam disease or ME. It's not "biomedical". ->

5. Minna Johansson says she is afraid of an epidemic like in Norway, where ME sufferers are in dark rooms for years, if nothing is done about it. The #longcovid patients "defend themselves" with biomedical explanations for their illness. ->

6. Gunnar Carlgren says there are people who are attracted when a new diagnosis like #longcovid comes along. The only thing that helps is to have years of knowledge about that person so that you can feel what they feel. ->

7. Linda Ängeby thinks it's nice to talk to others who think that #longcovid has to do with the soul. ->

You can watch the full webinar here. [...]

Some links about #longcovid to follow ->

Translated with www.DeepL.com/Translator (free version)

 

[Wonko]

 

[rvallee]

Another Twitter thread with short video clips from SFAM's (the Swedish Association of General Practice) webinar October 2020:

These people are more delusional than even the worst caricatures they paint of us. Completely detached from reality. I really hope long haulers understand the threat this represents to them and how utterly unaccountable it is.

Yeah, right, primary care will totally be able to handle this. Pffff.

 

[mango]

I really hope long haulers understand the threat this represents to them and how utterly unaccountable it is.

I too really hope so, but to be honest, at this point in time I'm not sure if they do? The differences between views and attitudes of long haulers in Sweden compared to other countries fascinate me.

Some Swedish long haulers I've chatted with are still just giving a shrug when ME is described as a mental health problem. They don't seem to think there's anything wrong with that.

It seems to me that many of them don't (want to) see the connections, the similarities and the shared risks... Maybe they really do believe they are different, that bps won't happen to them?

My impression is that some of them believe that it's possible that some cases of long covid could have psychosocial causes ("rewire your brain" programs are very "in" right now... many are trying and celebrating Gupta, ANS Rewire etc), and therefore they don't (yet) see the problem with a psychosocial approach.

Also, many of them seem to believe that long covid is completely different to ME in this context, because in long covid there have been measurable, biological findings on tests and in research studies etc ... Seeing that LC and ME are "so very different", there surely is no chance they would ever be lumped together or be treated in a similar way, right?

Some seem to have had their eyes opened, though. They are diving deep into ME research, politics and history, even reading books on ME. That's really good to see

 

[Midnattsol]

The swedish debate has now spilled over into Norway with an article in Aftenposten. They talk to Lisa Noren, a doctor with long covid, and also with a swedish BPS proponent who referred to Henrik Vogt who has also been interviewed.

Sverige har egne mottak for dem som sliter etter korona. Legen er selv en av pasientene.

Sweden has its own reception for those who are struggling for the corona. The doctor himself is one of the patients.

There seems to be some weird translations by Google, corona has been turned into coronary heart disease for example.

 

[Kalliope]

The swedish debate has now spilled over into Norway with an article in Aftenposten. They talk to Lisa Noren, a doctor with long covid, and also with a swedish BPS proponent who referred to Henrik Vogt who has also been interviewed.

Sverige har egne mottak for dem som sliter etter korona. Legen er selv en av pasientene.

Sweden has its own reception for those who are struggling for the corona. The doctor himself is one of the patients.

There seems to be some weird translations by Google, corona has been turned into coronary heart disease for example.

Thanks for these links! The article is behind paywall for me, but do you know if it's the same ward they are writing about which the Swedish newspaper Aftonbladet today reports will be shut down?

https://www.aftonbladet.se/nyheter/a/Qm13k8/la-ner-covid-mottagning--med-en-smiley

 

[Kalliope]

Thanks for these links! The article is behind paywall

https://www.aftonbladet.se/nyheter/a/Qm13k8/la-ner-covid-mottagning--med-en-smiley

Henrik Vogt gave a summary of the article in a post on his Facebook page together with some reflections. Here's a google translated excerpt:

I have received inquiries from Swedish doctors who are a little despairing that people at the new clinics established in Sweden are told to avoid activity. Professionals have begun to treat people like damaged osprey leaves.

The patient in this article has oxygen uptake measured and gets a lot of electrodes on long after she has been ill.

If this is a practice given to most patients, I think it is deeply inappropriate. There is no evidence that this will help, on the contrary. Doctors have had a good opportunity to decide whether lung damage or reduced oxygen uptake is the problem, and doing sensors and lots of examination for so long afterwards creates concern and body focus.

The fact that there is a predominance of women and no unambiguous connection with how serious the infectious disease has been before is just like with ME / CFS. It is also one of the things that indicates that the causes are more complex than that it is actually a question of "late injuries". The maintenance causes are something other than the triggers.

To me, this wave does not come as a surprise, especially not when doctors and researchers constantly paint the devil on the wall and create expectations of long-term illness in patients around the world.

 

[Midnattsol]

Thanks for these links! The article is behind paywall for me, but do you know if it's the same ward they are writing about which the Swedish newspaper Aftonbladet today reports will be shut down?

https://www.aftonbladet.se/nyheter/a/Qm13k8/la-ner-covid-mottagning--med-en-smiley

They say the ward will close but open at a new location at the hospital, and link to this article: https://www.svt.se/nyheter/lokalt/s...AUORsH7aUwmqubiQRW2a9GTD-GKEaOv2OYLIvXP4j6UBA

Doctors have had a good opportunity to decide whether lung damage or reduced oxygen uptake is the problem, and doing sensors and lots of examination for so long afterwards creates concern and body focus.

You know what also creates concern? Being ill and not getting any help, let alone being believed.

 

[rvallee]

To me, this wave does not come as a surprise, especially not when doctors and researchers constantly paint the devil on the wall and create expectations of long-term illness in patients around the world.

This is the kind of comment that should paint him as a joke. Nearly everyone with LC was told it was impossible for anyone to be ill past 2 weeks, then told it would go away after 2 more weeks, then after 2 months, and so and on. There has been widespread dismissal of the pandemic from the start, with so many saying "only" vulnerable people are at risk, especially 80+. What a bunch of crap. Especially in freaking Sweden where they are still pushing herd immunity and must suppress LC. This is nothing but gutter politics, like people who argue that most homeless people choose it as a lifestyle.

Also one of the most common complaints from long haulers is that barely anyone talks about it. Which is true, because it's not taken seriously. I don't know if the deniers just pretend otherwise, or are simply incapable of understanding that the rest of the population does not pay attention to those things and doesn't care, let alone is afraid of it.

 

[mango]

The discussion on Twitter continues. Here are parts of a convo between GP and SFAM board member Andreas Thörneby, chairperson of the Swedish Covid Association Åsa K Hedlund, GP and Cochrane director Minna Johansson, and neurologist Sara Garcia Ptacek. Including a comment by Sten Helmfrid.

Andreas Thörneby
As a GP (and board member of @SFAMSverige) I am struck by some of the views on postcovid/pasc that seem to be represented among some GPs, psychiatrists, journalists and others.

Sara Garcia Ptacek
Totally agree. As a neurologist we know that functional symptoms if present are often linked to non-functional ones and need to be managed in parallel

Andreas Thörneby
"Both-and, not either-or"

Sten Helmfrid
Remember that we are talking about science, not politics. Explanatory models must not be based on compromises between different camps, but the one with the best empirical support is sought. In the absence of evidence, one must admit ignorance. Research into functional diseases suffers from methodological shortcomings.

Sara Garcia Ptacek
Exactly. IF they exist. Big IF. And rule out non-functional causes first

Åsa K. Hedlund
Hmmm. What do you mean? What should be excluded first?

Rather, research suggests that several systems may jointly contribute to the symptom picture. At the same time. Multidisciplinary teams should therefore work on diagnosis. Together.

Sara Garcia Ptacek
You should always rule out non-functional causes of anything first, doesn't just apply to Covid

Andreas Thörneby
Yes and no. In the case of "as yet unexplained symptoms", I think it is often good to consider all possible explanatory models early and transparently, including functional ones.

The risk is otherwise that the idea of functional or psychosomatic explanations is introduced too late in an investigation, as a pure exclusion diagnosis/guess.

The message risks becoming "sorry I thought you were really ill but it was just my imagination".

Sorry if I'm expressing myself clumsily but I hope you understand what I mean. In my experience, if a suspicion of a functional component is raised early, it can be good to mention it early. Then the message becomes "I see that you are ill but I am not sure how it is connected. It may well be a bodily reaction to stress, at least in part, but I want to consider and investigate other possible causes in parallel. What do you think?"

Minna Johansson
Exciting! I myself have been symptomatic for 1 year postcovid and think that for my part it is mainly somatization in complex interaction with other things. I find it hard to understand the condescending view of functional symptoms that has permeated the debate (by doctors and patients) and wish for more reflections like this.

I wish for more humility, thoughtfulness and self-critical reflection in the post-covid debate. It seems to have been hijacked by two camps (everyone should go to multidisciplinary teams and cause/treatment is 100% biomedical vs cause is 100% psychological and sick leave never justified). More grey scale.

Åsa K. Hedlund
That's not true. Those who want multidisciplinary teams want comprehensive assessments (including psychological perspectives) in accordance with WHO recommendations.

But without these teams (in which doctors work together) you cannot investigate multisystemic symptoms in which several systems interact.

Those who want multidisciplinary teams want to seek the answers to the questions. Those who don't want it relatively consistently claim to already know the cause or that current expertise is sufficient (often without examining the patients).

The research agrees. (It's the debate that isn't.)

Andreas Thörneby
I don't perceive the need for highly specialized teams (for knowledge building and for the patients who need* them) to be controversial at all. There are certainly the occasional exceptions.

(* how these should be defined, however, is probably more controversial)

Åsa K. Hedlund
We have observed increased mortality in this group (both hospitalized and home-cared). Until we know which subgroups are in trouble, we should be very humble, before we conclude that some are not in need.

Andreas Thörneby
Sure.

I think the view of functional symptoms is due to two things: first, that many patients have experienced that it was considered by some (many?) in the health care system to be less "real" than broken bones and heart attacks and therefore disqualified from good help; and second, that it is about many patients' own lay prejudices or ignorance. Even when *healthcare* takes a functional syndrome very seriously, it is not always consistent with the self-image of the sufferer (or those around them).

This is why knowledge is so important, how to explain and understand it all, and to make it clear that it is not a matter of "imagination" or "simulation". And to devote time, care and resources to the problem, whether or not "x-rays show anything".

Karina Olsen
In the media in Norway we see some health professionals claiming that Longcovid is driven by stress and symptom focus. They are blaming researchers, doctors and the media. There is nothing to suggest that this is the case, but such theories create destruction for patients.

Andreas Thörneby
Happens in Sweden too. My assessment is that the problem is not as widespread as some might like to claim, but quite bad enough, and the voices heard are quite strong and collectively cause great damage to trust.

Åsa K. Hedlund
And what do you base your "assessment" on?

There is a lot of mistrust in the health care sector. The ability to identify the patient group is weak.
Moreover, not everyone is in the health care system and those who are there are scattered around the country's local healthcare centers.

How can you assess at all? And reject serious studies?

Every doctor has a couple or three cases and therefore thinks it is rare. It is a serious structural defect.
That's a lot of people in total.

 

[Midnattsol]

The discussion on Twitter continues. Here are parts of a convo between GP and SFAM board member Andreas Thörneby, chairperson of the Swedish Covid Association Åsa K Hedlund, GP and Cochrane director Minna Johansson, and neurologist Sara Garcia Ptacek. Including a comment by Sten Helmfrid.

This exchange made my day, I can see later today if I manage an english translation o the whole thing. The gist of it is that Johansson asks for humility and that people should be willing to listen. She is then confrotned with a talk she gave where she talks about how symptoms can become more chronic if we talk about them, and that there is a danger it will turn into an epidemic of ME patients in dark rooms as has happened in Norway previously. And where others talked about how symptoms are not dangerous as if this was already researched and proven.

Who is it that lacks humility and doesn't listen to patients?

For the last time, I have never said psychology plays no role at all.

But it doesn't make people have fevers, become desaturated or develop POTS or kidney failure. Looking at the whole picture, we need a biomedical debate"

 

[Arnie Pye]

Andreas Thörneby
Yes and no. In the case of "as yet unexplained symptoms", I think it is often good to consider all possible explanatory models early and transparently, including functional ones.

The risk is otherwise that the idea of functional or psychosomatic explanations is introduced too late in an investigation, as a pure exclusion diagnosis/guess.

The message risks becoming "sorry I thought you were really ill but it was just my imagination".

Sorry if I'm expressing myself clumsily but I hope you understand what I mean. In my experience, if a suspicion of a functional component is raised early, it can be good to mention it early. Then the message becomes "I see that you are ill but I am not sure how it is connected. It may well be a bodily reaction to stress, at least in part, but I want to consider and investigate other possible causes in parallel. What do you think?"

I completely disagree with this. Deciding that a condition might be "functional" i.e. all in the head, can kill people who could have been treated. I think deciding something is functional takes a doctor's eye off the ball. Once they've even considered functional the tendency seems to be to assume all organic causes do not fit and have been excluded.

 

[Mithriel]

Andreas Thörneby

I think the view of functional symptoms is due to two things: first, that many patients have experienced that it was considered by some (many?) in the health care system to be less "real" than broken bones and heart attacks and therefore disqualified from good help; and second, that it is about many patients' own lay prejudices or ignorance. Even when *healthcare* takes a functional syndrome very seriously, it is not always consistent with the self-image of the sufferer (or those around them).

This is why knowledge is so important, how to explain and understand it all, and to make it clear that it is not a matter of "imagination" or "simulation". And to devote time, care and resources to the problem, whether or not "x-rays show anything".

So patients don't want things to be called functional because they think it is treated as less real and because they are prejudiced against it.

This highlights the real problem which is that True Believers just can't even envisage that they could be wrong when they decide something is functional (because they know everything already? Who knows?)

No room to consider that patients reject the idea because it relies on a distortion of their experience and that the treatments they offer are either useless or make them worse.

 

[Esther12]

The discussion on Twitter continues. Here are parts of a convo between GP and SFAM board member Andreas Thörneby, chairperson of the Swedish Covid Association Åsa K Hedlund, GP and Cochrane director Minna Johansson, and neurologist Sara Garcia Ptacek. Including a comment by Sten Helmfrid.

Thank you for that translated thread.

 

[rvallee]

The discussion on Twitter continues. Here are parts of a convo between GP and SFAM board member Andreas Thörneby, chairperson of the Swedish Covid Association Åsa K Hedlund, GP and Cochrane director Minna Johansson, and neurologist Sara Garcia Ptacek. Including a comment by Sten Helmfrid.

Those discussions are as boring as they are pointless. People can argue all they want for many lifetimes and it doesn't change the fact that science always decides in the end, indifferent to the arguments. No one ever just comes up with the truth this way, it never happens.

Zero difference between this and natural philosophers arguing about the nature of, well, nature, before science made breakthroughs that invalidated all the opinions. Not a single opinion was even close to reality. That's not how things are understood, the whole thing is just a giant circle jerk taking place instead of real work. All these people want is to hear themselves talk. They bring absolutely nothing (Sten aside, who is the only one dealing with real issues).

 

[Kalliope]

I wonder how history will judge the ethics of doctors warning against even talking about Long Covid, as they believe awareness of Long Covid is causing it. Very little is said about it in public in this country, and that seems to be leading to potentially harmful situations.

In the newspaper VG Preben Aavitsland said today that he believes more risk might be connected to children being vaccinated compared to getting infected. He's an epidemiologist at the Norwegian Institute of Public Health.

This evening VG writes that in the municipality Skien, adolescents are paying money in order to get infected. Society is opening more up for those who are either vaccinated or have had the infection, and since the official story in this country is that there's minimal risk for young people, why not just get it over with in order to gain more freedom?

These adolescents have been actively prevented access to the information they need in order to be able to make safe choices for their own health and their future.