BPS attempts at psychologizing Long Covid

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.

 

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.

 

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.

 

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.

 

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

https://twitter.com/user/status/1391311943206674433

 

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.

 

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

 

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

 

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.

 

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.

 

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.

 

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.

 

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.

 

Thank you for that translated thread.

 

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).

 

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.