BPS attempts at psychologizing Long Covid

[alex3619]

I wish I was exaggerating but I am not. An "Overcoming MS" leaflet said that evidenced based medicine means using all kinds of evidence including observations, anecdotes and experience as well as clinical research. Though patient experience not so much!

This claim is technically correct, but completely ignores the underlying reasons why evidence is ranked. In every ranking I have seen, anecdotal evidence is the lowest form of evidence. Its frequently wrong or misleading. This level of evidence covers doctor experience I think. Dealing with these issues is a big fail for EBM in my view. The underlying theory appears sound, but how its used in practice, and misused (including deliberately), is far from sound.

 

[Jonathan Edwards]

Yes, he allows in one sentence that some unconscious feelings can result in physical symptoms, but overall it's an argument for let's listen to patients and not default to psychological explanations--a reversal of the other one.

"So why is the default approach doubting patients instead of believing them?"

But this is very much the BPS façade. We take everything seriously and of course do not dismiss anything as psychological because mind and brain work together in complicated ways and we have learned to be nice to people (even if a bit late in one case).

 

[Kalliope]

Trial by Error by David Tuller: More on that WSJ Opinion Piece; and Q-and-A with Author of this Week's WJS Rebuttal

Quote:
Did you already feel this way or did your own experiences change your mind?

My own experiences played a large role. There is a lot of skepticism in medicine, and much of that permeates into the way things like chronic Lyme or fibromyalgia are addressed in medical school. I think I only learned about chronic fatigue syndrome once I developed Long COVID myself. My own experience made me more sensitive to the patient experience, and in particular the psychological effects of being dismissed by a provider. While there is an innate empathy in most who choose psychiatry as a profession, becoming a patient yourself has a special way of increasing empathy for other patients.

ETA: Both WSJ opinion pieces were paywalled, but Eric Topol has shared them on Twitter:

 

[dave30th]

But this is very much the BPS façade. We take everything seriously and of course do not dismiss anything as psychological because mind and brain work together in complicated ways and we have learned to be nice to people (even if a bit late in one case).

I don't think you're giving him enough credit, actually. He's young and working through his thoughts about how his field is addressing these issues and pushing back against stupidity. I mean, I like Stilton cheese and many blue cheeses!

 

[mango]

There's a paywalled editorial by the infamous Hanne Kjöller in Sweden's largest morning paper today. I don't have access, but I suspect the headline says it all...

"Specialist clinics for cultural illnesses function as early ill health retirement factories."



Specialistkliniker för kultursjukdomar fungerar som förtidspensioneringsfabriker
https://www.dn.se/ledare/hanne-kjol...ar-fungerar-som-fortidspensioneringsfabriker/

ETA: The framing/narrative she's using is so called "cultural illnesses" (psychological/emotional/existential/social threats are supposedly "internalised" and expressed as physical symptoms), referring to Karin Johannisson's earlier works. For more info on the psychosomatic concept "cultural illnesses" see posts here and here.

 

[mango]

There's a paywalled editorial by the infamous Hanne Kjöller in Sweden's largest morning paper today. I don't have access, but I suspect the headline says it all...

"Specialist clinics for cultural illnesses function as early ill health retirement factories."



Specialistkliniker för kultursjukdomar fungerar som förtidspensioneringsfabriker
https://www.dn.se/ledare/hanne-kjol...ar-fungerar-som-fortidspensioneringsfabriker/

ETA: The framing/narrative she's using is so called "cultural illnesses" (psychological/emotional/existential/social threats are supposedly "internalised" and expressed as physical symptoms), referring to Karin Johannisson's earlier works. For more info on the psychosomatic concept "cultural illnesses" see posts here and here.

Reply by Kjell Rautio, investigator of welfare, health insurance and social politics.

A certain "cultural illness" is spreading in DN's editorials again…

I read the editorial page in today's DN and see that the editorial board still seems to have confidence in a writer who has hardly made herself known for source criticism and balanced analytical ability when it comes to writing about sick leave.

How often has Hanne Kjöller not delivered half-truths and hard angles in order to build up a discourse of cheating and over-exploitation, which serious researchers have repeatedly punched holes in?

This time, she draws breakneck parallels and makes comparisons between electromagnetic hypersensitivity and long-term Covid in a way that is actually embarrassing, not least given the deadly pandemic most of us are aware that we are in the middle of.

Instead of writing about cheating and over-exploitation, she now uses the term "cultural illness" as an ideological bat.

Although the analysis goes in the same direction as before and is just as thin as it usually is, as for example the researcher Niklas Altermark and others who have followed the health insurance issue have already stated in various comments on social media.

As I said, this is not the first time Kjöller has embarked on a moral crusade against sick leave.

Rautio then gives several examples of when Kjöller has previously seriously misrepresented the facts in her published work.

En viss ”kultursjukdom” sprider sig på DNs ledarsida igen…
https://loblog.lo.se/2021/04/en-viss-kultursjukdom-sprider-sig-pa-dns-ledarsida-igen/

Google Translate, English



(Edited to correct spelling mistakes.)

 

[Kalliope]

New article in Morgenbladet - this time an interview with Paul Garner. Also this is paywalled, but here are two google translated quotes:


Recovery Norway is an organization that shares stories about people who, with the help of cognitive and mental techniques, have recovered from medically unexplained diseases such as ME.

Through these, Garner got in touch with a psychologist who himself had recovered from ME in a similar way.

- It was amazing. Suddenly I got another explanation for what happened to me. Having an explanation is incredibly important. I had become convinced that I was disabled, or that there was something seriously wrong with my mitochondria (which control the energy production of cells, editor's note). I saw no end to it.

Now, however, he was told he wanted to get better.

- They explained that this was partly about my neurons firing false fatigue alarms. I had to start thinking positively and exercise carefully. I was better in two weeks. It was like turning on the light!

...

He is concerned that it is important to listen to those who have recovered, and highlights the stories Recovery Norway shares, as very important. For him, it was crucial that someone said to him, "I have recovered, and so can you."

- Just listening to those who are still sick is not what helps, he says.

- You are a professor of evidence-based medicine and was one of the founders of the Cochrane collaboration, which summarizes and evaluates research to provide answers to which forms of treatment give the best effect. At the same time, are you now sitting and talking about how important anecdotes are?

- It is a reasonable question. Hypotheses must be created somewhere. In evidence-based medicine, we say that one does not do a randomized controlled study of whether a parachute works or not. These stories from Norway work a bit like a slap on the cheek. They are extraordinary. This "turn on the light" moment I'm talking about - it's real, says Paul Garner.

Randomized controlled trials are obviously important, especially in biomedicine, when it comes to medicines and small effects. But here the effects are quite dramatic, and it should not be rejected.

ETA:

An of course there's a kick towards ME patients as well:

When people like me come and say that you can actually influence the symptoms with your own conscious thoughts, then people become bonkers. They say I'm just saying "it's in my head". It has been difficult.

- But is not that an understandable reaction? This must be provocative to hear for those who have tried, but where it does not work to just "turn on the light".

- Well, you can not turn on the light without wanting to change anything. I think what we are seeing now is that the langcovid communities are gathering and starting to act like the ME communities, and saying that their symptoms are being denied.

Comment on Twitter to this interview with Garner from Jonas R. Kunst, a professor in psychology at Oslo University

 

[Kalliope]

Comment on Twitter to this interview with Garner from Jonas R. Kunst, a professor in psychology at Oslo University

Continued:

 

[NelliePledge]

Thanks @Kalliope Good to have another Psychology Professor speak up.

 

[Mithriel]

They explained that this was partly about my neurons firing false fatigue alarms. I had to start thinking positively and exercise carefully.

Where is the evidence that neurons are firing false fatigue alarms? What could cause them to do that? Has anyone shown that any fatigue is caused by neurons firing alarms?

If it is true, why are the neurons sending false signals? Something must be wrong further down the chain of causation what could it be? It is another soundbite that sounds reasonable till you try to pin down what it means.

If all that about neurons actually is what is causing longcovid how does positive thinking change them. How does the signal travel from your thoughts to the neuron?

Now, maybe positive thoughts make you breath more deeply and take in more oxygen, maybe exercise increases your mitochondrial numbers, maybe cortisol levels drop or your heart rate goes down or POTS gets better.

It is possible and necessary to formulate theories into testable hypotheses and then report the results with as little jargon as you can before these extraordinary claims can be made. Even a thought experiment or a clear description of what you theory involves would be useful as it could be tested for plausibility. We do not know the exact causes of many diseases but things like migraines are not spoken of so dogmatically.

 

[Tom Kindlon]

They are interested in reaching out to others also

 

[mango]

There's a paywalled editorial by the infamous Hanne Kjöller in Sweden's largest morning paper today. I don't have access, but I suspect the headline says it all...

"Specialist clinics for cultural illnesses function as early ill health retirement factories."



Specialistkliniker för kultursjukdomar fungerar som förtidspensioneringsfabriker
https://www.dn.se/ledare/hanne-kjol...ar-fungerar-som-fortidspensioneringsfabriker/

ETA: The framing/narrative she's using is so called "cultural illnesses" (psychological/emotional/existential/social threats are supposedly "internalised" and expressed as physical symptoms), referring to Karin Johannisson's earlier works. For more info on the psychosomatic concept "cultural illnesses" see posts here and here.

A paywalled reply by Adam Svanell, editor at Svenska Dagbladet (Sweden's third largest morning paper).

Unfortunately I don't have access, but it still feels good just knowing that people are openly expressing criticism of Kjöller's harmful, ridiculous opinions.

Kjöller kallar tusentals svenskar inbillningssjuka
https://www.svd.se/kjoller-kallar-tusentals-svenskar-inbillningssjuka

Kjöller calls thousands of Swedes hypochondriacs

What is the least constructive thing you can do for patients with a disease that is so new and different that not even the healthcare system understands it? Probably to say that they are not really sick.

Svanell: “Kjöller's article does not contain any constructive suggestions on how to support and help the victims or any humility in the face of the complexity of the issues. The only thing it does is to suggest that many thousands of Swedes are hypochondriacs. ” Amen!

 

[rvallee]

I was curious about the date the thread started, and found it somewhat amusing seeing it started with Henrik Vogt arguing with Greenhalgh over something... that she agrees with today, in fact has been indirectly promoting the LP based on Garner's account, and would be more likely to be on a panel agreeing with Vogt about most of what he says.

Although they did start agreeing that ME patients are horrible people who deserve to be neglected so there was always some common ground. But she didn't know at the time that they are more or less the same. That became kind of awkward.

 

[mango]

A paywalled reply by Adam Svanell, editor at Svenska Dagbladet (Sweden's third largest morning paper).

Unfortunately I don't have access, but it still feels good just knowing that people are openly expressing criticism of Kjöller's harmful, ridiculous opinions.

Kjöller kallar tusentals svenskar inbillningssjuka
https://www.svd.se/kjoller-kallar-tusentals-svenskar-inbillningssjuka

I've read it now, someone sent me a copy. It's a good article.

ME is mentioned briefly:

Now, a few decades later, it can be noted that some of the diagnoses [Johannisson] saw as cultural diseases have not disappeared at all. On the contrary, some seem fairly constant over time, and biomedical explanations for them can not be ruled out - in the case of ME/CFS, for example, there are many indications that the triggering factor is usually an infection. Aha, an interesting parallel to postcovid.

 

[Andy]

WSJ Opinion: The Dubious Origins of Long Covid by Jeremy Devine (paywalled)

- Echoes of chronic fatigue in the effort to blame to coronavirus for a host of questionable symptoms
...
- The topic deserves serious study. Some patients, particularly older ones with co-morbidities, do experience symptoms that outlast a coronavirus infection. But such symptoms can also be psychologically generated or caused by a physical illness unrelated to the prior infection. Long Covid is largely an invention of vocal patient activist groups. Legitimizing it with generous funding risks worsening the symptoms the NIH is hoping to treat.

ETA: Eric Topol has shared the whole text on twitter

Trial By Error: Northwestern Law Professor Steve Lubet’s View of that Wall Street Journal Editorial

https://www.virology.ws/2021/04/06/...s-view-of-that-wall-street-journal-editorial/

 

[Kalliope]

The Swedish newspaper Aftonbladet has an article today about quarrel between doctors about what Long Covid is.
The article is also covered in the Norwegian newspaper Dagbladet.

Aftonbladet: Läkarstrid om postcovid: "Det har blivit ett ställningskrig"
google translation: Long-term illnesses are the subject of heated debate among doctors: "It has become a position war"

quote:

The condition, which mainly affects women, is a complication of covid-19. Symptoms include fatigue, cough, shortness of breath, fever and neurological disorders. Aftonbladet has previously written about several patients affected by the syndrome and studies have indicated that as many as 1 in 20 may have long-term problems.

But now the diagnosis is being questioned.

"Too careless"
- We have used the term far too carelessly. Everything that can go wrong is attributed to covid-19, says Anders Ekbom, professor of epidemiology at Karolinska Institutet .

The criticism also applies to how patients have been cared for in care.

Nowadays, many long-term patients are referred to a special clinic in Stockholm, something that some experts consider to be a waste of resources.

 

[Suffolkres]

Chief editors for editorial and opinion pages at WSJ:

https://www.wsj.com/about-us?mod=wsjfooter

I have no idea how something so ill-informed and full of hate managed to be OK with these two.

https://sunnybrook.ca/media/item.asp?c=2&i=1315&f=learning-while-teaching

Old ( 2015) but an interesting insight into this year 3 post gard student wannabee journalist... 'gentleman'! ( my emphasis)


‘……With only a few weeks left before the start of a new school year, Devine is driven to get as much done as he can. After a full day’s work, he often returns to the lab after dinner to check the results of his latest programming experiment and to set up a new experiment to run overnight. He admits that he can be a bit obsessive about his science projects. “They’re almost all consuming,” he says. “I think about them all the time.”

Despite the long hours and what he calls “the transient sense of hopelessness that comes with a failed experiment or a terrible result”, this experience has been a good one for Devine.

“One reason why I’m so happy in this lab right now is the freedom,” he says. “I don’t feel like there’s a hawk over my shoulder. I feel like I can make mistakes and learn my way.”
And when he’s learning, his computer is learning too.
Jeremy Devine received a D+H Summer Studentship Award.

 

[mango]

There's a paywalled editorial by the infamous Hanne Kjöller in Sweden's largest morning paper today. I don't have access, but I suspect the headline says it all...

"Specialist clinics for cultural illnesses function as early ill health retirement factories."



Specialistkliniker för kultursjukdomar fungerar som förtidspensioneringsfabriker
https://www.dn.se/ledare/hanne-kjol...ar-fungerar-som-fortidspensioneringsfabriker/

ETA: The framing/narrative she's using is so called "cultural illnesses" (psychological/emotional/existential/social threats are supposedly "internalised" and expressed as physical symptoms), referring to Karin Johannisson's earlier works. For more info on the psychosomatic concept "cultural illnesses" see posts here and here.

Another reply, this time an editorial i Dagens Nyheter (Sweden's largest morning paper), by people at Karolinska University Hospital's postcovid clinic and others.

Postcovid är ingen kultursjukdom
https://www.dn.se/ledare/replik-postcovid-ar-ingen-kultursjukdom/

Google Translate, English

Postcovid is not a cultural illness

Hanne Kjöller's comparison of postcovid with electromagnetic hypersensitivity is science-denial and patient contempt, write eight doctors and researchers working at Karolinska University Hospital and Skåne University Hospital. [...]

In terms of science, the condition POTS (Postural Orthostatic Tachycardia Syndrome) is described in more than 1,000 scientific articles; the symptoms are well described and clearly defined with diagnostic criteria.

Those who have it get greatly increased heart rate when they stand up, and also have various circulatory, neuromuscular and other organ-specific symptoms. The disease is serious and can lead to severe loss of function, in the worst cases, affected patients become bedridden.

At present, there are more than 40 cases of POTS (meeting the scientific criteria for this disease) at the postcovid clinics at Karolinska Solna and in Lund, and many more are under investigation.

Referring to the fact that some values that are not included in the diagnostic criteria are normal, and then suggesting that this would be a "cultural illness" is an expression of arrogance and denial of science; Good science abounds in terms of POTS.

As bad as the denial of science is the contempt for patients with severe symptoms that permeates the entire article. Does not Hanne Kjöller understand the difference between describing diseases that are related to culture and the spirit of the times in the way Karin Johannesson did in her books, and the damage Hanne Kjöller now causes to suffering patients?

Instead of making patients suffering from disorders triggered by covid-19 disbelieved, more knowledge and new treatment options are needed, which must be based on respect for the patient and accounts about his or her illness.

 

[Kalliope]

A weekly, Norwegian newspaper - Morgenbladet - has an article about Long Covid where among others Wyller is interviewed.

The article is paywalled, but here are some google translated quotes, and it seems he gets a bit resistance from another researcher (Langeland):

Wyller is one of the country's leading experts on chronic fatigue syndrome or ME. There has long been a storm around this research because patient organizations and activists react negatively to research that is not only oriented towards biological and medical explanations - among other things because many have experienced not believing that the disease is real. Wyller is one of those who believe that social and psychological factors must also be taken into account in order to understand the disease - and who emphasize that different types of cognitive psychology can be helpful for many of the patients. This perspective emphasizes that there is no simple distinction between the nervous system, thought patterns and the body's function in general - rather, it is full of complex interactions. One explanation for ME may then be that a stressed nervous system has got stuck in some tracks from when the patient was acutely ill. In that case, it is important to get the nervous system to perceive and interpret the body and the environment in a different way. The controversy in the ME debate is largely about whether this can be achieved through psychological methods and gradual training or not.

Wyller is now working, together with an international network of researchers, on a major research project that will follow young people who become infected with the coronavirus. Then they will see if any of them develop chronic fatigue syndrome, and maybe find out what makes them vulnerable. The plan is to follow 500 young people for at least six months from the time they are confirmed infected. Along the way, they are examined with a wide range of tests: genetic analyzes, studies of the immune response and nervous system, mapping of personality and medical history - everything is necessary to form a holistic picture.

...

- I am convinced that more people get symptoms if everyone walks around and is afraid of these ailments. It is extremely important not to dramatize and give the impression that very many become very ill, says Wyller.

- But it is difficult, because this is also a very real phenomenon that deserves public attention. And it is of course crucial that individual patients are taken seriously - the condition is completely real and can be severely disabling, regardless of the underlying causes. This requires some wisdom both from us in the health care system and from the press.

Nina Langeland in Bergen says this is an issue they can not deal with.

- No, I certainly do not believe in hiding research findings for most people. Besides, it is my experience, after 35 years as a clinician, that it is wise to listen to what people say - they are incredibly often right.

Nina E. Steinkopf has written a good comment to this article, and also to the interview with Paul Garner which was in the same newspaper.

Can positive thinking cure Long Covid?

Quote:
Physicians and researchers have an ethical responsibility in the way they disseminate medical information. When the impression is given that Long Covid is in fact fear of illness, those who in turn also claim to have the solution to the problem have a duty to inform about intellectual conflicts of interest. There will be power and prestige, and also big money involved when the Long Covid patients are enrolled in research projects, when treatment methods are recommended, and when NAV can finally demand courses in LP as a condition for financial support.

 

[Amw66]