Preprint Subdomains of Post-COVID-Syndrome (PCS) -- A Population-Based Study, Bahmer, Scheibenbogen et al

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EndME

Senior Member (Voting Rights)
Subdomains of Post-COVID-Syndrome (PCS) -- A Population-Based Study

Post-COVID Syndrome (PCS), encompassing the multifaceted sequelae of COVID-19, can be severity-graded using a score comprising 12 different long-term symptom complexes. Acute COVID-19 severity and individual resilience were previously identified as key predictors of this score.

This study validated these predictors and examined their relationship to PCS symptom complexes, using an expanded dataset (n=3,372) from the COVIDOM cohort study. Classification and Regression Tree (CART) analysis resolved the detailed relationship between the predictors and the constituting symptom complexes of the PCS score. Among newly recruited COVIDOM participants (n=1,930), the PCS score was again found to be associated with both its putative predictors. Of the score-constituting symptom complexes, neurological symptoms, sleep disturbance, and fatigue were predicted by individual resilience, whereas acute disease severity predicted exercise intolerance, chemosensory deficits, joint or muscle pain, signs of infection, and fatigue. These associations inspired the definition of two novel PCS scores that included the above-mentioned subsets of symptom complexes only. Both novel scores were inversely correlated with quality of life, measured by the EQ-5D-5L index.

The newly defined scores may enhance the assessment of PCS severity, both in a research context and to delineate distinct PCS subdomains with different therapeutic and interventional needs in clinical practise.

https://arxiv.org/abs/2503.07283
 
EndME said:
Of the score-constituting symptom complexes, neurological symptoms, sleep disturbance, and fatigue were predicted by individual resilience
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They used the Brief Resilience Scale, where you rank how much you agree with these questions:
  1. I tend to bounce back quickly after hard times
  2. I have a hard time making it through stressful events.
  3. It does not take me long to recover from a stressful event.
  4. It is hard for me to snap back when something bad happens.
  5. I usually come through difficult times with little trouble.
  6. I tend to take a long time to get over set-backs in my life.
https://ogg.osu.edu/media/documents/MB Stream/Brief Resilience Scale.pdf

It seems like it suffers from all of the usual flaws of questionnaires. I don’t know why they would use it, it’s really disappointing coming from Scheibenbogen.
 
Utsikt said:
They used the Brief Resilience Scale, where you rank how much you agree with these questions:
  1. I tend to bounce back quickly after hard times
  2. I have a hard time making it through stressful events.
  3. It does not take me long to recover from a stressful event.
  4. It is hard for me to snap back when something bad happens.
  5. I usually come through difficult times with little trouble.
  6. I tend to take a long time to get over set-backs in my life.
https://ogg.osu.edu/media/documents/MB Stream/Brief Resilience Scale.pdf

It seems like it suffers from all of the usual flaws of questionnaires. I don’t know why they would use it, it’s really disappointing coming from Scheibenbogen.
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I remember seeing that in another study on ME specifically and they used it to claim all sorts of psycho BS.

It’s one of the most ignorant blind applications of a questionnaire I’ve ever seen. Basically all the questions will be answered differently by a sick vs a non-sick person. And half of the questions have someone having PEM as a major confounder aswell.

I recommend they try it on cancer to see.
 
Utsikt said:
They used the Brief Resilience Scale, where you rank how much you agree with these questions:
  1. I tend to bounce back quickly after hard times
  2. I have a hard time making it through stressful events.
  3. It does not take me long to recover from a stressful event.
  4. It is hard for me to snap back when something bad happens.
  5. I usually come through difficult times with little trouble.
  6. I tend to take a long time to get over set-backs in my life.
https://ogg.osu.edu/media/documents/MB Stream/Brief Resilience Scale.pdf

It seems like it suffers from all of the usual flaws of questionnaires. I don’t know why they would use it, it’s really disappointing coming from Scheibenbogen.
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Personally, the worse my ME has got the worse my resilience has got, because it's like being stuck in a pea soup fog mentally and all this stuff is happening or might happen at any second that is utterly terrifying and you're alone, even if you have family around you you are alone with your disease. On top of that it's like whatever ME does cognitively has messed up my emotional regulation completely.

It's also unethical to use these scales because we are a traumatised population. The trauma of being gaslit into throwing away my entire life, being abandoned by doctors, knowing if I need serious medical help it is not safe, becoming the closest thing in medicine to an unperson, that's going to mess with your ability to cope with stuff, even aside from the fact ME messes with your cognition and emotional regulation.

Yeah it's really disappointing to see Schibenbogen going anywhere near this kind of thing. Because for every person like me there is someone coping much better in even worse circumstances. But I do think that ME messes with your ability to regulate emotions. My partner struggled too with this. When we were both mildish and undiagnosed it was quite difficult if we were both having a black day mood wise. It's definitely corrolated with crashes. Like much harder to cope with simple life stresses. I really struggle to cope with the simplest stuff without melting down now. And yeah a lot of that is because of my mental health but I feel like my ME is magnifying my mental health issues, not the other way around.

I just feel like even when it's used with the best intentions, stuff like this is going to be picked up on by the worst actors (i.e. BPS) and I just think researchers should stay well away from it.

Brain foggy so this is a bit of a word salad.
 
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Yann04 said:
I recommend they try it on cancer to see.
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Yup. There will doubtless be people who cope better with stage 4 cancer than others who have stage 1 cancer.

But it makes no difference to the fact that they have stage 4 cancer.

Nor is a test of individual resilience any use in predicting the stage of cancer a newly diagnosed person has, or whether they'll survive it.

It might—possibly—be a rough indicator of how much support the person would benefit from. But even that isn't fixed, because long term resilience is a skill that people can acquire, and immediate resilience depends on factors as minor as whether or not it's cold today or they had an enjoyable time with a friend yesterday.
 
Kitty said:
Yup. There will doubtless be people who cope better with stage 4 cancer than others who have stage 1 cancer.

But it makes no difference to the fact that they have stage 4 cancer.

Nor is a test of individual resilience any use in predicting the stage of cancer a newly diagnosed person has, or whether they'll survive it.

It might—possibly—be a rough indicator of how much support the person would benefit from. But even that isn't fixed, because long term resilience is a skill that people can acquire, and immediate resilience depends on factors as minor as whether or not it's cold today or they had an enjoyable time with a friend yesterday.
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I also think it’s telling to include resilience as one of the things you ask about - it implies that you believe it might be relevant for the broader picture.
 
This is appalling on so many fronts calling a bunch of statements on how well someone thinks they cope with stress is not measuring anything, except possibly how badly others treat you and how difficult your life circumstances are. Stresses could refer to anything from a broken fingernail or a missed train to life changing illness and being gaslighted. It's meaningless and insulting.
Psych rubbish like this should never be used for people who are physically ill.
 
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The fact that people survive for decades with life altering disabilities tells me that we are far more resilient than we have ever been given credit for . All this nonsense goes back to the claim that personality is responsible for illness and disability. ie its the individuals fault. welcome back to the dark ages .
 
alktipping said:
The fact that people survive for decades with life altering disabilities tells me that we are far more resilient than we have ever been given credit for . All this nonsense goes back to the claim that personality is responsible for illness and disability. ie its the individuals fault. welcome back to the dark ages .
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That's one of the things that anger me the most about the obsession with stress, fear and whatnot. Humans have survived appalling conditions for thousands of generations. Life today is super easy for most compared to most of our history. The entire model flies in the face of reality, especially as it makes so much of it being about small, random bits of dissatisfaction with life, or whatever, because most of us have lived relatively normal, boring lives.

It isn't just that build those models around intense trauma, like surviving a bombing blitz or pogroms or anything like that. No, it's basic high school bullshit like being slighted by someone, passed for promotions and other tiny bits and pieces. Just because they have nothing else to go on, and they always work from the conclusion out.

The whole thing looks like it was built by aliens who have never lived a single moment in a human body, but it's so appealing that even professionals who should know better about how this junk is always abused fall for it.
 
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