Too much focus on your health might be bad for your health: Reddit user’s communication style predicts their Long COVID likelihood, 2024, Segneri+

Too much focus on your health might be bad for your health: Reddit user’s communication style predicts their Long COVID likelihood
Ludovica Segneri; Nandor Babina; Teresa Hammerschmidt; Andrea Fronzetti Colladon; Peter A. Gloor

Long Covid is a chronic disease that affects more than 65 million people worldwide, characterized by a wide range of persistent symptoms following a Covid-19 infection. Previous studies have investigated potential risk factors contributing to elevated vulnerability to Long Covid. However, research on the social traits associated with affected patients is scarce. This study introduces an innovative methodological approach that allows us to extract valuable insights directly from patients’ voices. By analyzing written texts shared on social media platforms, we aim to collect information on the psychological aspects of people who report experiencing Long Covid. In particular, we collect texts of patients they wrote BEFORE they were afflicted with Long Covid.

We examined the differences in communication style, sentiment, language complexity, and psychological factors of natural language use among the profiles of 6.107 Reddit users, distinguishing between those who claim they have never contracted Covid -19, those who claim to have had it, and those who claim to have experienced Long Covid symptoms.

Our findings reveal that people in the Long Covid group frequently discussed health-related topics before the pandemic, indicating a greater focus on health-related concerns. Furthermore, they exhibited a more limited network of connections, lower linguistic complexity, and a greater propensity to employ emotionally charged expressions than the other groups. Using social media data, we can provide a unique opportunity to explore potential risk factors associated with Long Covid, starting from the patient’s perspective.

Link | PDF (PLOS ONE) [Open Access]

 

(It continues to astonish me just how large a body of literature will have to be ejected to make any progress. Coming from a highly technical area of medicine with a literature base that is often very complex (physics, maths and now machine learning), I just can't even with this stuff.)

They almost develop some insight in their limitations section, mentioning comorbidities, but immediately backtrack to "health anxiety".

 

After spending roughly two minutes skimming this paper:

I think the study is unethical: although the Reddit forum is public no-one consented to the scraping of their health-related data. Reddit users are not representative of the population (probably younger and more technically literate amongst other factors) and users of support groups tend not to be representative of people with their illnesses. It doesn't address potential confounding variables: age, gender, socioeconomic status, pre-existing health conditions all of which can influence communication style, likelihood of support group use as well as likelihood of developing Long COVID. Looks like a lot of low McFadden's R2 values suggesting that many of their models explain only a small proportion of the variance in the data. Also they jump to hypochondriasis with no consideration of alternative explanations: surely people more interested in health-related topics would be more likely to participate in an online support group for the illness or to discuss their personal experiences online?

Won't waste further time on this but would be a good one for a journal club to tear apart.

 

The just world fallacy goes like this: people who get sick are the ones who, at some subconscious level, want to.

it's an extremely comforting pattern of thinking for the healthy and it will never go away.

 

Could it be that people with existing health problems might be more susceptible to long covid?

No that couldn't possibly be. It must be magical psychosomatic self-induced illness for which we have zero evidence.

 

This makes me highly uncomfortable.

I have some pretty vulnerable posts I made on the specific forum they analysed at the beginning of my illness.

But what makes me uncomfortable is that they then went on to analyse users post history outside the forum.

I doubt they asked the moderators if they could use the data either. Disgusting…

And this doesn’t even account for the fact that a lot of accounts on the forum are fake accounts with fake “illness stories” to try and advertise treatments.

 

Also the study seems to be ignoring that people who had prexisting health conditions were more likely to develop long COVID?

Also, people who used reddit to discuss chronic health issues pre-pandemic will be more likely to use it to discuss their long covid, than those who used reddit without discussing health issues. (Not sure if the coronavirus infection group counts because its not the same to talk about being infected with COVID, “oh cool, I have the new virus? any tips”, than to be talking about chronic health issues.)

 

If my data had been scraped I think I'd make ethics complaints to the institutions of everyone involved pour decourager les autres.

Something that does concern me is that if "research" like this is being carried out on unsuspecting Reddit support-group users then it could also be carried out against us by scraping S4ME. Perhaps would be useful to obfuscate usernames from non-logged-in users, implement rate limiting and browser behaviour checking, and/or make more content members-only?

 

If I had the energy, I would. I hope someone does.

 

This "study" is a good example of the harm of bias in medical research. It starts off with a sound premise and choices, but veers off completely into a pre-fabricated appallingly biased conclusion that makes an explicit decision about a preferred direction of causality out of nothing but correlation. So in other words: typical non-biomedical research, which is usually a proxy study of the researchers' biases and outcome-seeking using cherry-picked data to justify themselves.

I have no issues with the choices they made about using those sub-reddits, they are public forums, or checking users' comments in other sub-reddits. But Reddit is not a place where people talk about all the things in their lives, it's a limited sub-set and a lot of people who do discuss many other things elsewhere only go on Reddit for some topics, like people who used it sporadically before, but heavily once they developed LC. Might as well record people's conversations to study what they focus on in their daily lives, but only at grocery stores and clinics, and conclude that they only talk about food and health problems.

It's actually odd that they chose to do only text pattern matching. Given all the AI hype, they made a choice to not use it where it would have made far more sense. They do broach the issue of how the patterns had to be refined, but it's simply not sufficient. They make arbitrary decisions about the so-called traits that aren't too different from how phrenology was formed on the basis of explicitly European cranial features as the morphological traits of civilized intelligence.

The importance they give to first-person narrative is plain weird. Health problems are personal in ways that most other topics are discussed. Of course they will more often have first-person pronouns than, say, discussions about hardware or video games.

They do notice and discuss the fact that it has been shown that prior health problems are a significant risk factor, but choose to disregard this in order to produce a very distinctly clickbait title that will be widely shared by those who had already made their minds.

Their claims have to be accepted at face value as well. There is no verifiable data supporting their claims that users talked more about health, just the final output of their arbitrary choices. I don't think it would hold much to scrutiny.

However a major factor here, which would create a trend, is that the chronic illness community is heavily present in those forums, precisely because the medical profession has failed them all. I don't know if it's because they are ignorant of that fact. I guess they must be. Nevertheless this would be like finding that a population of refugees fleeing from a war-torn impoverished region sure has an usual number of attorneys, medics and other types of professionals with advanced degrees, because they also counted the staff from international NGOs who make up 10-20% of the people there.

Again and again you find this, it's not even a pattern, it's an obsession: bias, bias everywhere. Even by the standards of social sciences, and this here is social science, it's extreme in medical research. It's about always making the same decisions as to where the direction of causality must go based on what they prefer to see out of correlational data.

I have no doubt this will be shared gleefully by self-important smug people everywhere for a few weeks, then be totally forgotten. It's just sad seeing how confused and dysfunctional this profession is. The best they can do is borderline magical, but the worst that they do is atrocious at a level that is unacceptable in any other profession. High floor, very low ceiling, in the parlance of sports.

 

There's policy-based evidence making. Maybe there's also ego-driven evidence-making?

Driven by the need to avoid the painful admission that one is not perfect and is disappointing patients that are seeking help.

If it's not a "medical problem" then it's not the responsibility of the doctor but someone else's.

 

Hypochondriacs posting in an online LC group doesn't make them an LC patient. The title of the paper should be changed to "Reddit user’s communication style predicts their self-declared Long COVID likelihood". And of course, hypochondriacs are more likely to claim that they have LC, just like they do with cancer, Black mold allergy, EM sensitivity, MCS, MS, Lyme disease, ... and ME/CFS. Doesn't mean that they have them, till they are diagnosed. Nor does it mean you are a hypochondriac if are diagnosed with LC. Since neither implies the other, it's a useless hypothesis.