[Auracle]

I think there are a couple of things going on:

Long COVID is real, but I bet most people that think they have it don’t.

On the other hand, I doubt long COVID is all that novel compared to what happens with other viruses as well. I think there’s some pushback because the media acts like long COVID is some terribly novel and huge thing, when neither are probably true.

All that said I’m glad more research is happening on this front. We might all get hit by some long term virus consequences over the course of our lives, or perhaps we all live with some constantly.

[bryanlarsen]

Agreed. I have a friend who has Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome, which has destroyed her life, turning the most energetic person I knew into someone who cannot walk more than a block a day. Her ME was likely triggered by the H1N1 flu in 2009. It's too early to tell whether this is the same as long COVID, but it is certainly suggestive.

[galangalalgol]

My first thought upon hearing about it was that long covid seemed like a rather general autoimmune disorder. But the researchers all seemed very hesitant to label it as such. Perhaps just because they haven't isolated which antibodies are being elevated, but also perhaps there is a compounding effect from organ damage? The impact of viral loads will some day be viewed as what shaped history and held us back from faster progress.

[whimsicalism]

Researchers who suggest that there is a substantial psychosomatic component to CFS get death threats and have been forced to discontinue their research, so the field is sort of at an impasse because only physical (usually viral) explanations get any play which is fine because CFS is definitely partially caused by post-viral sequelae but you get crucified for suggesting there is a significant psychosomatic component.

[chasebank]

Longshot but have her look into megadose Thiamine (B1). Some miracle stories out there.

[hef19898]

Also, millions upon millions of people contracted COVID. Hence a higher number of long-COVID cases. Research into this is a very good thing so.

That the media is over selling it, sure they do. Heck, we had almost two straight days of life coverage of lionesse-turned-out-to-be-a-boar in Germany. At the same time there were elections in Spain, a vote on the justice system in Israel, among other things. Those two alone could have deserved some well researched articles and background pieces. But I digress...

[Auracle]

Sure. I also have a young daughter in daycare so I've had a cold about every 2 months for the past year and a half. Obviously those haven't been as bad as the two times I had COVID, but we don't really know if that means long term effects are less likely...and people get a lot of colds.

[hef19898]

Good news is, as soon as kids grow out of those childcare and pre-school disease magnet super spreader phase, so do you. The cycle seems to repeat with each child so...

[dkarl]

I think long Covid suffers from the same problem as Lyme disease, and also whatever set of real conditions end up explaining chronic fatigue syndrome: the list of symptoms, for a layperson, sound vague enough to attract large numbers of people looking for a concrete explanation for vague but persistent feelings of malaise. Basically the things that an infomercial might invoke: are you tired? foggy? achey? have trouble sleeping? And it's a physical diagnosis with a physical cause.

I remember when I first identified what I was going through as depression and started thinking about getting therapy, someone referred me to an online chronic fatigue syndrome community. I found that it was shockingly rife with open bias against the concept of mental illness. Tons of people with classic depression or anxiety symptoms and no detectable physical problems were railing against doctors who suggested they see a therapist or psychiatrist. Over and over again, in slightly different words, I saw them express variations on the same theme: a mental health diagnosis means you are malingering, stupid, narcissistic, or out to control others by being a burden on them. In their framing, a doctor who suggested seeing a mental health professional was guilty of maliciously lashing out at a patient whose condition threatened their facade of professional omniscience. It was my personal real-world introduction to this kind of stigma, and to this day, I still think about that CFS forum when I look around and wonder what people think about me.

Of course there were kernels of truth there, that some doctors harbor stigma against mental illness themselves, and that such doctors are more likely to suggest mental health treatment when they don't trust or respect a patient, often due to bias. Some of the people on that CFS forum had stories that were pretty damning of their doctors. But many felt that merely raising the topic of mental health was proof of a doctor's bad faith.

Later, when my father was diagnosed with Lyme disease, I read up on it online and noticed the same crowd in the Lyme disease "community." Time had passed, and the stigma was not so openly expressed, but there was the same subset of people with symptoms completely consistent with depression, who were devastated by the suggestion to see a mental health professional and were determined to leave no stone unturned in their search for a more acceptable explanation of what they were experiencing. And of course there were those who saw through the wannabes and leaped to the conclusion that the whole thing was made-up.

With Lyme disease, I felt the sting from both sides: people on one side implying that my depression was just laziness hiding behind a medical facade, and people on the other side denying the reality of a disease my father had. It reminded me that some percentage of people claiming to have CFS had real undiagnosed physical ailments and were probably mortified by their unwilling association with the circus of offensive and/or nutty people who claimed to "advocate" for them. My father certainly had nothing to do with the Lyme conspiracists that demanded a congressional investigation into the theory that the U.S. government invented it as a bioweapon[0], but they're always going to be connected in people's minds.

Luckily, in the case of long Covid, medical science had a head-start. The possibility of long Covid was raised by doctors before it even happened, based on experience with other viruses, and the initial reporting was driven by the medical community as a whole. (The way many people first heard of CFS was thanks to the media savvy of quack doctors selling therapies to desperate people.)

Anyway, that's a longwinded way to say that long Covid will attract its share of self-diagnosing crackpots, but the public perception will hopefully not be affected as much as in the case of CFS or Lyme disease.

[0] It happened in early 2019: https://www.vice.com/en/article/neaxdq/the-conspiracy-theory...