Exploring self-reported causal attributions of long COVID: beyond viral origins, 2024, Sirotiak et al

Exploring self-reported causal attributions of long COVID: beyond viral origins

Zoe Sirotiak, Jenna L Adamowicz, Emily BK Thomas

Abstract
Long COVID is associated with diverse physical and mental health symptoms. The mechanisms of long COVID remain unclear, and many with long COVID face stigma, dismissal, and few treatment options.

The present study aimed to identify self-reported causes of long COVID endorsed by individuals living with the condition. Adults in the United States self-reporting long COVID (N = 562) participated in an online survey. Participants were an average age of 38.6 years, with most identifying as female (49.1%), White (83.6%), and not Hispanic or Latino/a/x (77.0%).

Perceived causes of long COVID were assessed, noting the proportion of individuals endorsing each cause. The most frequently endorsed causes of long COVID included germ or virus (61.4%), altered immunity (37.9%), stress or worry (35.9%), overwork (34.7%), chance or bad luck (34.2%) and aging (33.6%). Although widely acknowledged scientifically to result from COVID-19 infection, some with long COVID attribute their illness to other causes.

Link | PDF (Discover Public Health) [Open Access]

 

It is a pity that the authors do not understand the basics of what they are researching. Causation of disease is always complicated and involves all sorts of factors. Which is what the subjects thought.

 

Gee, I wonder where they must have heard that

 

Given the prevalence of Covid now it must be getting harder to say if any set of symptoms is Long Covid or not, as for a very large percentage of the population new onset symptoms will follow a Covid infection.

In order to continue to diagnose new cases of Long Covid there will need to be a clear set of criteria.

For example with new cases of ME/CFS are they people whose condition was triggered by having Covid or are they people who would have developed ME/CFS anyway, even if they had not had a Covid infection. It is hard if not impossible to answer this. So unless there are additional symptoms associated with the preceding acute infection such as loss of the sense of smell, wouldn’t an ME diagnosis make more sense.

 

Yes. Between that and the fact all sorts of illnesses ME, POTS, autoimmune diabetes, Sjörgens, whatever else COVID can trigger being lumped all into one basket. I think the long COVID label is starting to become less useful.

 

With time it's pretty much guaranteed that LC will fade away. The question is whether it leaves nothing to replace it, or is properly replaced by all the things the medical hates the most and refuses to acknowledge even exists. There is simply no way to even research it anymore, there is no control group anymore.

Most likely they will choose the void-that-amplifies-all-suffering. And very likely blame TikTok. They never tire of blaming TikTok. I wonder how they'd even manage to survive this if the TikTok ban goes through, they'd have to find something else to blame for their systemic failure. They got big brains, but the egos are 10x that size.

 

Tiktok, video games, instagram, facebook, myspace, dungenouns and dragons, rock n roll...

There will always be a scapegoat to blame all the next generations problems on.

I want to imagine in Sumerian times an older generation blaming a younger generations illness and woes on mixing with the nextdoor village's youth and learning a new way to sow seeds or something like that, or whatever the most shocking thing you could do back then was.

 

It’s the cuneiform that causes all that behaviour. Reading puts all those bad ideas into their minds.

 

Oh yeah, I remember when I was a teen, violent movies and video games and Marilyn Manson personally were responsible for all the teen violence.

Also, there was a book in our high school library titled "Satanism and Rock Music" about what terrible effects rock music has on youth. We were excited to read something about the Norwegian black metal scene in it. But to our disappointment it was all about classic rock from the 60s and 70s, with an entire chapter about The Beatles.

 

The question about "germ/virus" also seems unclear. Perhaps some respondents thought they meant "persistent germ/virus." I mean, these were long covid patients and presumably they all believed they'd had Covid-19. So they might not have realized that what the investigators meant by asking "germ/virus" was "Did you have a triggering case of Covid-19." Instead, respondents thought the question meant: "Do you believe your prolonged Long Covid symptoms mean you have ongoing viral infection/replication"?

Instead, they concoct other reasons to explain what they consider to be an anomaly: "There are several possible explanations for this finding, including a lack of clear understanding about long COVID, its potential mechanisms, and the complexity and diversity of symptoms reported [1]. Considering the significant stigma that some with long COVID have reported [6, 7], it is also important to consider social explanations, including psychological attributions from healthcare providers and the influence of media in creating uncertainty regarding long COVID causes."

 

The authors say we don’t know the aetiology of Long Covid and then blame the media for creating ‘uncertainty’. Their uncertainty is fine but anyone else’s uncertainty that might contain different speculation/assumptions to their own is harmful.

 

I take this study as potentially interesting in that it shows deep problems with health care and how they can't keep up to date with new information or deal with uncertainty, even when there's an actual elephant in the room and the mystery is "who trashed this room?!", they keep insisting they must find the mouse responsible for it. Or maybe it's bad vibes. But clearly anything but the elephant in the room.

The paragraph you quote can make sense in a "some people think that because this is what MDs tell them", and finding that it's a problem. Here it's genuine socially-spread misinformation about the cause of an illness, and that source is the medical profession itself. Which some people accept, then go on and spread.

Of course it can be interpreted many different ways. This is very similar to how political disinformation can influence elections perversely, such as when the public is convinced that crime is out of control, even if it's actually lower and on a downward trend, because they keep hearing this message from politicians who explicitly want people to believe false things because those beliefs get them elected.

Because the attributions are very telling in their likely source. Germ or virus and altered immunity are the most likely and rational explanations, likely come from a combination of patients noting the timeline of events, and the mass of MDs who are comfortable admitting this is the likely explanation but they don't understand how and can't do anything about it. Meanwhile stress or worry and overwork are guaranteed to mostly come from MDs who reject the most likely explanation and prefer to push psychobehavioral misinformation because it feels more reassuring to them, despite being false. And then chance or bad luck is probably more of a "whatcha gonna do about it?" fatalistic shrug from people who didn't really take the ambiguous question for what it is and instead took it as a "why did you become ill?" There is a lot of this sentiment in the patient communities, people who wonder what the hell they did wrong to end up this way. I sure have and still do, even after 16 years.

It says less about what the patients think than about what they heard from MDs. But the researchers here are taking a too-neutral stance, like a bad pundit who does a "both sides" interview with someone clearly lying and someone correcting those lies, leaving it to the viewers to decide which version they want to choose from. Which is definitely not science. But medical culture only accepts a cause once it has nailed down its mechanism, so even if it's the obvious explanation, the elephant, they can't help but obsess that it must, MUST, be people running around knocking large coconuts instead.

So the authors of the study don't appear to have made up those other options, they simply came organically from health care systems completely out of their depth and mostly fumbling this whole thing. Fortunately astrological explanations did not make the list because they are not popular, but I'd bet that doing something similar with the Spanish flu would likely see it as a top 10 explanation, since astrology was way more popular back then, even among professionals.

Because really this could be a study about disinformation:

Those attributions are very common and the media are definitely pushing the denial side that originates from both the medical profession and the conspiracy crowds, two groups who look down on each other but here found common ground in having decided that COVID does not do what it does. Here at least they place the attribution properly, that people generally don't think those things by themselves, they simply trust professionals to not be the way they are: willing to make stuff up to soothe egos that are far larger than their brains.