BPS attempts at psychologizing Long Covid

[Solstice]

If enough of us would've done our positive affirmations in the morning Tinkerbell would've still been alive!

 

[Kalliope]

The Norwegian news site Nettavisen had an article about Long Covid yesterday titled: "Long covid": normal bodily conditions may be interpreted as symptoms

The article is behind paywall, so here's a summary:

Researchers say that media articles, negative messages from the doctor and discussions among post covid sick people on social media can be an important cause of the condition, due to the nocebo effect.

PhD student Mesier Hojjat Daniali co-authored a study from 2021 showing that the more people believe they had Covid, the more they felt symptoms. Also that the more anxiety people had before assessment, the more and stronger symptoms they got.

Another study referred to is from JAMA psychiatry and shows that worrying about covid-19, anxiety, stress, depression and loneliness increased the probability for experiencing self reported post covid ailments with 50% compared with people without these stress factors.

A third study referred to in the article showed that worry over Covid was a more important cause of insomnia than the virus infection itself. Insomnia is one of the 200 symptoms tied to "long-covid".

Daniali concludes that the cause of "long covid" can be explained as a combination of biological, psychological and social factors.

The Norwegian Covid Association is in the article described as "exclusively referring to research that supports the hypothesis that physiological conditions in the body caused by the infection covid is the cause of "long covid"".

Professor in psychology (and LP researcher) Silje Reme says the research is pointing more towards psychological and social factors as explanations for Long Covid than biological factors. Biology, as for instance individual vulnerabilities, due to genes or childhood trauma, can influence how sick you get from covid-19.

Professor Egil Fors agree and says the conditions for long covid are:

- genes
- life experiences as bullying and trauma in childhood
- a trigger, for instance a virus infection with covid
- maintaining factors, as though patterns or economical circumstances

Then senior doctor and professor Preben Aavitsland from the Norwegian Institute of Public Health says the same goes for borrelia, and that there's no such thing as a tick epidemic and chronic borrelia. The contagion comes from internet, not the woods.

Professor Reme says that increased attention to symptoms and pain create symptom network in the brain, just like highways with their main task being to focus on the symptoms.

Professor Fors says in order to get better you have to do some changes, not just wait for improvement. You have to work with "yellow flags" as:

- catastrophising as in thinking that pain is harmful or dangerous and that it increases with activities
- misinterpretation and increased awareness towards bodily symptoms
- talking about one's problems
- not being physically active and getting a lot of rest
- bad sleep
- having small economic gain of returning to work
- having night work and little autonomy at work
- having a poor social network
- having an overprotective spouse

These yellow flags maintain chronic pain in many different conditions because they raise the stress activation in the body, which can increase the pain intensity. It can be fibromyalgia, chronic borrelia, chronic back pain, and "long covid".

And then the article ends with Professor in psychology Gerd Kvale who has developed a quick CBT for anxiety and OCD which also works for Long Covid. The subtitle is: A cure that works.

 

[Midnattsol]

 

[Sean]

PhD student Mesier Hojjat Daniali co-authored a study from 2021 showing that the more people believe they had Covid, the more they felt symptoms.

Is that supposed to be Long Covid?

If so, then how do they know which direction the association runs? Maybe people are accurate at judging whether they have LC or not, and to what degree. Maybe having a worse case (appropriately) reinforces the belief one has it?

Did they test for those kinds of possibilities?

 

[rvallee]

Toxic sludge is definitely good for you, say toxic sludge influencers.

 

[Arnie Pye]

catastrophising as in thinking that pain is harmful or dangerous and that it increases with activities

No wonder there are governments around the world who think torture is fine. It isn't harmful or dangerous apparently, and anyone who says it is is dangerous is just a wimp.

 

[Kalliope]

Is that supposed to be Long Covid?

If so, then how do they know which direction the association runs? Maybe people are accurate at judging whether they have LC or not, and to what degree. Maybe having a worse case (appropriately) reinforces the belief one has it?

Did they test for those kinds of possibilities?

No, it seems to be concerning the acute infection. But he seems to transfer it to Long Covid as well.

I think this is the study: Experiencing COVID-19 symptoms without the disease: The role of nocebo in reporting og symptoms

 

[Midnattsol]

Is that supposed to be Long Covid?

If so, then how do they know which direction the association runs? Maybe people are accurate at judging whether they have LC or not, and to what degree. Maybe having a worse case (appropriately) reinforces the belief one has it?

Did they test for those kinds of possibilities?

As Kalliope said, it was about the belief they had covid. Framing it as hypochondriac people who read about covid in the news and got scared, believing they had it.

 

[Arnie Pye]

As Kalliope said, it was about the belief they had covid. Framing it as hypochondriac people who read about covid in the news and got scared, believing they had it.

In the early days of Covid (early 2020) there was no way of being tested for it, so are those people who caught it early going to be stigmatised for life?

And now, in mid-2023, there is little discussion or advice in the UK about testing for people who get Covid late. It's as if the government want to pretend it never happened. Will those people with no official result from getting Covid late end up stigmatised too?

...

Anecdote : I've had Covid twice, the first time in Nov 2021. I was really quite severely ill in my first bout and was probably not far off being hospitalised. I had a pulse oximeter to get an idea of my oxygen levels in my blood and one afternoon while I was at my worst my oxygen saturation dropped to 80% and stayed there for several hours and then rose later in the day to about 90% or 92%. At the time the government was still interested in knowing how many people had Covid, and it was possible to get OTC tests for yourself to do at home, and for the NHS to test in a lab (not the same type of test as the free tests) and give you an official diagnosis. The free, OTC tests told me I was positive for Covid but I was determined to get an official diagnosis because I had already read about people who got Covid early being disbelieved. As someone who is routinely disbelieved by the medical profession about anything invisible it quickly became an obsession at a time when I was in no fit state to even follow the instructions properly. I don't know why, but my first NHS test came back very quickly as being unable to be tested. I was so upset that I was near tears. I sent off a second test, but had no idea how long people stayed positive for and thought it would return a negative result, but thankfully I got my official diagnosis that time.

My lungs weren't in good condition before Covid existed because of my long-term heavy smoking (I stopped in 2010). My lungs post-Covid have not recovered to the level they were before Covid and I've told one or two people that I have lung damage from Covid. And the immediate reaction has been "How do you know your lungs are permanently damaged? Have you had any scans or other tests? What about x-rays, CT scans, MRI scans?" And these questions have been asked in an accusatory tone, as if I couldn't possibly know that my lungs are damaged even though it is very clear to me that they are not working as well as they used to.

So even if you have an official diagnosis people will trot out the disbelief at the earliest possible opportunity. My lungs have continued to feel inflamed even after I recovered, and my second bout of Covid made them worse still, but I couldn't possibly know my own lungs are worse, could I?

 

[Kalliope]

A VERY frustrating podcast about Long Covid and ME. The solution is GET, CBT and the PACE trial was just great. Bah!

The doctor talking has been on a recent Long Covid conference in Melbourne and I wonder if this is where he might have learned these things?

https://www.abc.net.au/listen/programs/coronacast/getting-a-strong-grip-on-long-covid/102840158

 

[SNT Gatchaman]

Norman Swan. See eg thread Dr Norman Swan: ME/CFS is more psychosomatic than long-COVID

 

[Kalliope]

Norman Swan. See eg thread Dr Norman Swan: ME/CFS is more psychosomatic than long-COVID

Thank you, @SNT Gatchaman This was a new acquaintance for me.
He didn't say straight out this time that ME is psychosomatic, but that both Long Covid and ME are "very real". But I guess "very real" is just another dog whistle for psychosomatic.

 

[Sid]

But I guess "very real" is just another dog whistle for psychosomatic.

Definitely. No one starts off talking about cancer by saying it’s real. They only say that about things they regard as not real or at the very least “less than”.

 

[rvallee]

Thank you, @SNT Gatchaman This was a new acquaintance for me.
He didn't say straight out this time that ME is psychosomatic, but that both Long Covid and ME are "very real". But I guess "very real" is just another dog whistle for psychosomatic.

It is part of psychosomatic models to never say they mean psychosomatic. That's why they keep using new labels. They just think we're that dumb, but it's because they can get away by simply writing whatever they want to have happened.

 

[SNT Gatchaman]

But I guess "very real" is just another dog whistle for psychosomatic.

Interestingly he now says (at 7:04): "But the other tantalising thing here is it's real. Both conditions [ME/CFS, LC] are real. And if you pick up a consistent marker in the immune system, then that gives you an edge or a clue to what medications might in fact help here."

Previously he had said, in reference to LC as distinct from ME/CFS —

No, it’s not just hypochondria. The pattern is what we call syndromic. There’s a clear syndrome of long-COVID. Fatigue and other symptoms. But it’s not just fatigue, there’s other symptoms as well which creates a clear pattern for long-COVID, as opposed to say chronic fatigue syndrome or a chronic pain syndrome or some other thing like that.

They’re not hypochondria either but they are more (I’ll get killed for saying this) psychosomatic. What I mean there is, essentially, you’ve got a symptom, where something has created that symptom in your brain, and the brain has clicked through neurologically to give a sense of fatigue. Well, not a sense of, a very real feeling of fatigue, a very real feeling of pain. But long-COVID is a much more highly defined syndrome and increasingly it’s been associated with abnormalities in the immune system.

 

[Peter T]

No, it’s not just hypochondria. The pattern is what we call syndromic. There’s a clear syndrome of long-COVID. Fatigue and other symptoms. But it’s not just fatigue, there’s other symptoms as well which creates a clear pattern for long-COVID, as opposed to say chronic fatigue syndrome or a chronic pain syndrome or some other thing like that.

They’re not hypochondria either but they are more (I’ll get killed for saying this) psychosomatic. What I mean there is, essentially, you’ve got a symptom, where something has created that symptom in your brain, and the brain has clicked through neurologically to give a sense of fatigue. Well, not a sense of, a very real feeling of fatigue, a very real feeling of pain. But long-COVID is a much more highly defined syndrome and increasingly it’s been associated with abnormalities in the immune system.

What an intellectual and linguistic mess.

One could write an essay on what is problematic in just these two paragraphs, but here are just a couple of responses:

Firstly the idea that ‘long-Covid’ (note the use of a lower case ‘l’, which immediately devalues the concept as an identified syndrome, by implying the ‘long’ bit is somehow less a proper name for a condition than the ‘Covid’ bit) is ‘a much more highly defined syndrome, as opposed to chronic fatigue syndrome’ either is a careless misuse of one of the obsolete labels of ME/CFS intending rather to refer to the symptom of idiopathic chronic fatigue or is a complete misunderstanding of the nature of ME/CFS which if anything is a better understood as a condition than Long Covid, indeed with concepts such as PEM that have been use to develop our understanding of Long Covid and ignores the fact that well over 50% of those with Long Covid also meet the diagnostic criteria for ME/CFS. One can only conclude that the author deliberately intends to devalue ME/CFS or completely fails to understand the false implications people will take away from the misuse of the phrase ‘chronic fatigue syndrome’.

Then to define ‘psychosomatic’ as a ‘symptom in your brain’ where something has ‘clicked through neurologically to give a sense of fatigue‘ when also Long Covid is ‘associated with abnormalities in the immune system’, creates a situation where, given fatigue by definition is a psychological event regardless of its many possible physical or biomedical causes, the author has expanded ‘psychosomatic’ to potentially include any medical condition associated with fatigue whatever the biomedical underpinnings. This definition of psychosomatic logically includes cancer related fatigue or even malnutrition related fatigue as also ‘psychosomatic’.

Will we see cohorts of CBT practitioners being assigned to famine relief teams?

 

[Kalliope]

Interview in Swedish media with the Dutch researcher Hans Snoop who says CBT and GET is a treatment for Long Covid. The Swedish researcher Elin Lindsäter is planning a study on the same treatment in 500 severely fatigued patients. Even if not everyone is helped by it, it's important to try it, she says.

quote:
Many patients were initially skeptical that therapy would help and said they had a physical problem, but afterwards they were surprisingly positive, says researcher and psychologist Hans Knoop at the University of Amsterdam.

Hans Knoop has developed a treatment with cognitive behavioral therapy for patients who suffer from severe fatigue. It is about improving sleeping habits, gradually increasing activity and learning to deal with negative thoughts about fatigue, pain and worry about the disease. And a number of previous studies of patients with, for example, diabetes 1 and MS have shown that inactivity and anxiety can contribute to fatigue, and need to be treated according to Hans Knoop.

Sveriges radio: KBT kan hjälpe mot extrem trötthet vid postcovid
google translation: CBT can help with extreme fatigue in post-covid

 

[rvallee]

At least temporarily, it's sad to say but Long Covid has actually set us back. I saw an article promoting GET in a local newspaper. Didn't bother reading it, it's always the same crap anyway. And here Knoop can just make stuff as much as he wants, everything they do is opaque and based on "trust us, we're experts".

Reality just doesn't matter. They can make up whatever they want, with natural recoveries being the norm early on, then still rather common after, and loose criteria, they can get away with whatever as long as there is no progress in research. At least there is more research, but temporarily LC has been pretty disastrous for us overall. It actually reinforced the fairy tales. Good grief this is awful.

What a shit show. It's like a weird version of "the future is already here, just not evenly distributed".

 

[mango]

Interview in Swedish media with the Dutch researcher Hans Snoop who says CBT and GET is a treatment for Long Covid. The Swedish researcher Elin Lindsäter is planning a study on the same treatment in 500 severely fatigued patients. Even if not everyone is helped by it, it's important to try it, she says.

quote:
Many patients were initially skeptical that therapy would help and said they had a physical problem, but afterwards they were surprisingly positive, says researcher and psychologist Hans Knoop at the University of Amsterdam.

Hans Knoop has developed a treatment with cognitive behavioral therapy for patients who suffer from severe fatigue. It is about improving sleeping habits, gradually increasing activity and learning to deal with negative thoughts about fatigue, pain and worry about the disease. And a number of previous studies of patients with, for example, diabetes 1 and MS have shown that inactivity and anxiety can contribute to fatigue, and need to be treated according to Hans Knoop.

Sveriges radio: KBT kan hjälpe mot extrem trötthet vid postcovid
google translation: CBT can help with extreme fatigue in post-covid

Here's the forum thread for the study, which is currently recruiting:

Sweden: Psychological treatment for severe fatigue: A feasibility study, Lindsäter et al
https://www.s4me.info/threads/sweden-psychological-treatment-for-severe-fatigue-a-feasibility-study-lindsäter-et-al.39238/

 

[John Mac]

Mersey Care's Long Covid Service launches new exercise App for patients

Mersey Care’s Long COVID service has developed content for an online app to help speed up the recovery of patients suffering from the effects of the debilitating condition.

Working in partnership with Physitrack, the Long COVID service have filmed a series of breathing, movement and mindfulness videos that have been uploaded to the app, known as PhysiApp, allowing patients to see therapists performing the movements and techniques demonstrated in clinic.

The team can remotely monitor their patients’ activity via the new dashboard as they work through their tailored plan, which also allows them to comment on how they feel whilst participating in the movement and techniques.

“The resources we’re making available on the app, allow us to work closely with our patients to develop a personalised treatment plan, that can address not just physical symptoms but also emotional and mental wellbeing,” explained Dr Chris Barker, Mersey Care’s Clinical Director.

“The Long COVID service aims to empower patients with the knowledge and confidence to help manage their symptoms and regain control of their health.”

https://www.merseycare.nhs.uk/long-...service aims,regain control of their health.”