BPS attempts at psychologizing Long Covid

boolybooly said:
I agree its cruel but doubt that it is exceptional. Consider the inquisition, holocaust, pogroms, Serbia, Rwanda, Uighur.

It is human nature to inhabit a self-righteous identity and construct stereotyped perspectives on other humans justifying inhuman treatment.

This is how tribal and dominance instincts manifest in some people.
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This excessive cruelty is barely exceptional by human standards but unique in its circumstances. It's one thing for barbarian hordes to go around firebombing entire towns in a barbaric age, it's quite different when it's a national firefighting service that does it legally.

By those circumstances, it's truly a uniquely shocking barbaric leftover, there is no other expert profession that comes anywhere close to this level of failure and excessive cruelty, it's far beyond the closest contender by at least a whole order of magnitude.
 
The most annoying thing that is repeating itself is the absence of healthy allies, almost all the work is still done by those who are still ill, while those who improved significantly enough or are recovered have mostly moved on. There are a few but proportionally speaking it seems about similar to how it usually goes, it's just too small and everything is yet again the burden is fully on the back of those least able to carry it.

And yet again, basically no support within medicine itself, other than a very small number of dedicated people who have little to no resources, balanced by a slightly larger group of people working against the issue, wittingly or not. Hardly any credible research, the massive $1B funding appears to be thoroughly mismanaged, even used to justify essentially ending all ME research, when obviously the reality of LC should have meant instead a massive increase, not just logically or economically, but morally speaking. Instead there is clearly more effort spent denying and obstructing than the measly research done so far.

It's not 100% but about 99% of the burden is on the patients. Or let's say 98%, as pwME probably carry enough on our own to rate a full point. It's too trivial an issue, it just doesn't have enough "it" to interest people, not enough dazzle, like a handful of people stuck in a cave somewhere, that can grab the whole world's attention, because it's sudden and easy to grasp, it invites cameras somewhere, is exciting.

I had low expectations. None of those were met. Medicine's handling of LC rates a very mediocre 0, it would be insulting to the idea of putting in any effort at all about anything.
 
rvallee said:
This excessive cruelty is barely exceptional by human standards but unique in its circumstances. It's one thing for barbarian hordes to go around firebombing entire towns in a barbaric age, it's quite different when it's a national firefighting service that does it legally.
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The cruelty bit for me is that it is coming from the very profession supposed to relieve suffering.
rvallee said:
The most annoying thing that is repeating itself is the absence of healthy allies, almost all the work is still done by those who are still ill,
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This has always enraged me. It is one thing for an individual or small group within a profession to misbehave. But for virtually the whole profession to stand by and do nothing about it and sometimes even cheer them on, for decades, is a shocking indictment of the profession.
 
The New York Times said:
The Truth About Long Covid Is Complicated. Better Treatment Isn’t.
By Adam Gaffney and Zackary Berger
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wingate said:
Gaffney's tiresome refrain doubting that long Covid could result from a SARS-CoV-2 infection always comes back to his favorite (and seemingly only) evidence, studies that show patients with and without SARS-CoV-2 antibodies reported the same level of symptoms. Therefore, he says, the most plausible explanation must just be stress of the pandemic!
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This CDC article now demonstrates non-seroconversion in a significant number of people with reverse transcription-PCR demonstrated SARS-CoV-2 infection. They showed no antibody response to occur more often in younger adults and more often in females.

So Assoc. Prof. Gaffney, would you perhaps reconsider if a "thoughtful approach to this problem could also help us improve care more generally after the pandemic" as you wrote recently in your New York Times Opinion Piece?

Edit: Discussed further at CDC study finds that 36% of COVID patients never make antibodies
 
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A new opinion piece from Henrik Vogt about the danger of information about Long Covid. He has written it together with two paediatricians, one of them also works at the Norwegian Institute for Public Health

Hvor redde skal foreldre være for "long covid"?
google translation How afraid should parents be for "long covid"?

quote:
A Norwegian study from 2019 showed as an example that anxiety was a risk factor for developing postviral fatigue syndrome after kissing disease.

A Dutch study from 2013 showed that the greater the mother's focus on the children's symptoms, the worse the child's chance of becoming asymptomatic in such conditions.

With regard to covid-19, a Norwegian study has shown that anxiety in advance was associated with more reporting of covid-19 symptoms in adults.

An Irish study has made similar findings.

As the American researcher Arthur Barsky describes in an article in the journal Jama from 2017, medical information, even when disseminated in the press, can involve some form of harm. It is therefore not ethically neutral.

All in all, it seems medically inappropriate and ethically questionable to spread fear of "long covid" in children.
 
So being made aware of symptoms that others experience makes it more likely that when people experience those symptoms people will know what they have, and go to a doctor for confirmation, than those who don't have a clue, so put them down to a random illness which will, as they always have done in the past, just pass on its own?

These idiots get paid?

They clearly gave no idea that people can think.
 
But parents and children need to be aware of the risks of longcovid so they can make an informed decision about vaccination.

It reminds me of a phrase from George Orwell's 1984 "ignorance is strength".

Those papers show that awareness allows recognition, not that illness is the result of an overactive imagination.

Its not just anti-science, its anti-reason.
 
Another day . . . another stupid piece of inane 'I think therefore it's true'. Just because you have a thought about something doesn't make that something yield to your thought process.

The problem I'm having with all this is that the stupidity of it all is grade-school level obvious.
It is a business model not a scientific one.

Just for fun:

https://www.kpbs.org/news/2018/dec/22/researchers-show-parachutes-dont-work-but-theres/
 
The last author is also working for our public health institution, and all three have previously downplayed the effect covid can have on kids. Only a few days ago one repeated the claim that covid does not spread in schools for example (Norway opened schools/universities two weeks ago with no mitigations based on advice from the institute, we now have the highest covid numbers since the pandemic started, mainly driven by kids and students).
 
Kalliope said:
Hvor redde skal foreldre være for "long covid"?
google translation How afraid should parents be for "long covid"?

quote:
A Norwegian study from 2019 showed as an example that anxiety was a risk factor for developing postviral fatigue syndrome after kissing disease.

A Dutch study from 2013 showed that the greater the mother's focus on the children's symptoms, the worse the child's chance of becoming asymptomatic in such conditions.

With regard to covid-19, a Norwegian study has shown that anxiety in advance was associated with more reporting of covid-19 symptoms in adults.

An Irish study has made similar findings.

As the American researcher Arthur Barsky describes in an article in the journal Jama from 2017, medical information, even when disseminated in the press, can involve some form of harm. It is therefore not ethically neutral.

All in all, it seems medically inappropriate and ethically questionable to spread fear of "long covid" in children.
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That is a classic strawman argument.

Does the guy understand that almost no parents are telling their children they're going to get LongCovid?
 
But the official statement by the UK Government that schools do not spread covid is still true (made when they really, really, wanted to reopen schools and didn't give a ..... about who got infected, or how many, as a result)

Very few buildings are infected with covid (covid prefering to infect things that live), so....it was, and remains, the 'truth'.
 
Snow Leopard said:
That is a classic strawman argument.

Does the guy understand that almost no parents are telling their children they're going to get LongCovid?
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I was taught about "over reacting" mothers when we had our pediatrics subject. It's not so much that the mothers say to the child that they will get the disease, it's that the mothers interpret any and all symptoms as sign of a health conditions.

If we get these lectures in nutrition, I would not ve suprised if it's includes for other healthcare educations. :(
 
Midnattsol said:
I was taught about "over reacting" mothers when we had our pediatrics subject. It's not so much that the mothers say to the child that they will get the disease, it's that the mothers interpret any and all symptoms as sign of a health conditions.

If we get these lectures in nutrition, I would not ve suprised if it's includes for other healthcare educations. :(
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And I can imagine it's easy to get that suspicion confirmed in a mother of a child suffering from ME. The mother will be familiar with PEM, and might interrupt an activity before symptoms start showing, to minimise discomfort and pain. To health care workers with no knowledge of PEM they might think the mother is stopping a healthy activity and inducing symptoms.

My mother could often see when the limit was reached before I was aware of it. My face turned pale and stiff. She would say you're about to get worse now. But just because she recognised the signs, doesn't mean she caused them.
 
Moved post
Not so sure how to share this easily, rather long but informative thread in Dutch about the same failure over bad questionnaires in the Netherlands, polluting the whole thing with garbage in at the very first step. Has specific details about the questionnaires themselves so feels useful.

It would be seriously amazing if Twitter just offered a feature to auto-translate. It works well enough for it.

 
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Moved posts



1. As a longcovid patient i'm a part of the longcovid research project of the RIVM. Three months back I filled in the first questionnaire, today I filled in the second. I'm worried about the quality of this research.

2. One of the most significant symptoms of longcovid is a disregulated autonomous nervous system. For me that has become dysautonomia(POTS). The sympathetic part is over-active, which causes muscle tensions in patients, a rushed feeling, sleeplessness and sometimes even

3. the feeling of anxiety-attacks without a mental trigger. Relaxing is hard because the para-sympathetic nervous system get's less of a chance too do so. This results in muscle-tension, neck-pain, tension headache, a locked jaw and the feeling of adrenaline through your body.

4. Sometimes it's harder to take deep breaths, which makes your breathing shallower. The questionnaire of the RIVM directs a lot of attention to fear/anxiety and depression. Unfortunately symptoms that have little to do with these for longcovid patients get lobbed in with them.

5. As an example you have to fill in scores for: 'I feel tense', 'I feel anxiety or like something terrible is about to happen', 'I can sit comfortably and relax', and 'I've got a sort of anxious tense feeling in my stomach'

6. If a longcovid patient fills in this questionnaire truthfully, there is a big chance it scores high on anxiety and depression, because the symptoms of a dysregulated nervous system(dysautonomia) are scored under these categories.
 
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