[mikeyouse]

There's a popular opinion I've seen on HN that "long Covid" isn't a real phenomenon but it's pretty easy to reject that out of hand. There have been several studies, including a recent quadruple blinded one (where participants, care providers, investigators and outcomes assessors are all blinded to treatment/control groups) that show some interventions have statistically significant benefits to treating it;

https://www.thelancet.com/journals/laninf/article/PIIS1473-3...

It's obviously a real thing, post-viral syndrome/fatigue are well known illnesses and there's every reason to think some percentage of Covid cases would end up similarly.

[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...

[svnt]

There are some major qualifiers to this study:

1) The ages and BMI:

> The median age was 45 years (IQR 37–54) and median BMI was 29·8 kg/m2

2) The diagnosis of long COVID-19 was done by survey — this has been shown to be an unreliable method of assessing persistent symptoms of disease. This is in part because people will tell you they have symptoms if you give them a cause and ask. The diversity of the claimed presentation of symptoms is an indicator (e.g. > 50 different symptoms by article-in-support [1])

3) The hazard ratio 95% confidence interval extends to 0.99 when treatment is started within three days. This is not a strong result. 1.0 is no effect.

[1] https://www.medicalnewstoday.com/articles/symptom-burden-sur...

[mft_]

> 1) The ages and BMI:

> > The median age was 45 years (IQR 37–54) and median BMI was 29·8 kg/m2

Not sure what the problem is here? The age seems nicely representative without being too young (deal with COVID better) or too old (deal with COVID worse; and higher liklihood of comorbidities). The BMI is a little high, but then we know that larger people have a higher COVID risk, so maybe this makes sense? Either way, given this is a study of treatment effects, and the BMI was well-balanced between both groups, meaning it's reasonable to assume that it didn't affect the overall findings.

> The hazard ratio 95% confidence interval extends to 0.99 when treatment is started within three days. This is not a strong result. 1.0 is no effect.

The hazard ratio itself is 0.37, which is a pretty strong effect, and the effect is statistically significant. (Also, slight correction: the upper bound of the hazard ratio is 0.95 when treatment is started within three days.)

[svnt]

The issue I mentioned in reply to another comment below is that metformin, the medication they were having success with, is more commonly used as a treatment for type 2 diabetes.

[mikeyouse]

This is partly what I was talking about. Just odd dismissals of actuals scientific evidence.

It's a "major qualifier" that this study looked at middle aged overweight people? Or that they relied on a survey to assess symptoms but then quadruple blinded everyone? They added the long-covid assessment as a secondary endpoint to a group they were studying since before "long Covid" was a phenomenon.

And then to dismiss the result because you apparently misread the CI for the hazard ratio? For those on metformin, it extends to 0.89 not to 0.99 -- and is centered at 0.59 with a P = 1.2%. You can obviosuly quibble about subgroup analysis but for the 3-day group, it's 0.37 [0.15 - 0.95]. That's a fairly strong result!

[svnt]

The problem is always in the simplification as it is translated into lay conversations.

You cannot extrapolate from a median of obesity into the general population.

This is especially true when the medication you are having success with (metformin) is a treatment for diabetes.

What are they even measuring?

[mft_]

> This is partly what I was talking about. Just odd dismissals of actuals scientific evidence.

I've read (and heard first-hand) similar approaches by people with a (sometimes hidden) agenda to push. There's a lot of apparently "scientific" stuff out there, written confidently by people who ultimately aren't qualified, which is lapped up by those deep into the confirmation bias of whatever is topic is.

[DrBazza]

I have all of my running data on Garmin that shows pre and post COVID (at least 3 bouts).

I'm now 90 seconds/km slower, doing the same volume and all other things being equal (except age). My diet hasn't changed, I walk the same distances, climb the same number of stairs, steps per day, weight is the same, etc.

I just cannot get going. Laboured breathing, occasional randomly high heart rate at what would previously have been a LSR (long slow run) pace, where I'd been firmly in zone 3, now randomly hitting zone 5 for bit.

[dmccarty]

Mostly agree with the other posters here. To add my own anecdotal piece, I had a majority of the 12 symptoms[1][2] defined as long covid. Got covid immediately in Northern Thailand, Dec 2019. Over the next 24 months I went from a healthy (perhaps hyper fit) 40-something male to someone who could barely drag himself to the gym, struggled to complete workouts, went through bouts of mental fog, heart arrythmias, chronic exhaustion, etc. Power outputs were down ~20% on pre- vs. post-covid tracked workouts. Doctors were unsympathetic, prescribed vitamin D for lack of sunlight.

But it's impossible to know if "long covid" is causal vs. ancillary. I'm also 3 years older now, and who knows, maybe that's just part of life and the aging process. I'll say that what helped me the most was just consistently getting out of the house and getting exercise. I started small but it had its own compounding effects. I'm up to about 4 - 5 times per week now. Whether that's walking, running, lifting, or a even a Murph, every bit of exercise seems to have helped me down the (long) road to recovery.

I'll probably never be back to my old fitness level, but things are at least better now. Long covid is as undefinable as it is real, but it can be beat imho. ymmv of course. Good luck to all who are struggling with this.

[1] https://www.nih.gov/news-events/nih-research-matters/toward-...

[2] https://pubmed.ncbi.nlm.nih.gov/37278994/

[CommieBobDole]

I think it's real, I just don't think it's a particular Covid-specific thing. Infections and the immune response to them cause cellular damage, and that damage is different for different people because of a lot of factors - random chance, genetic predisposition, etc. I think this has always been a thing, but it wasn't always as noticeable because this happened to people sporadically as people got 'a cold' or 'the flu' which could have been any number of viruses. Now millions and millions of people have been infected with a fairly nasty coronavirus and the effects of this damage are showing up in large numbers.

Anecdotally, I came down with probably-not-Covid a couple of months back (fit a lot of the symptoms, but never tested positive) and I've only recently gotten my normal energy levels back, and my sense of smell, which disappeared entirely for a few days, is still wonky.

[BestGuess]

For real? Seems to me like the brain damage and stuff from the infection is pretty simple to understand so that'd be pretty real. From a sorta minimum idea thing that seems like the most solid and easy to understand long-term damage right? Easy to test too, I reckon. Why would people think that isn't real?

[adamlgerber]

Because Long Covid is not a scientific term in the way most people use it.

I've had many family members refer to having long covid because they had a persistent stuffy nose for a few months. Prob virus related to some degree but the looseness of the language makes invites skepticism.

Also some people also love being very vocal about any possible pathology they might have as a political position. Just invites more skepticism.

[conductr]

I'm kind of one of those people. I'm a medical layman and saying "long covid" is kind of a meme/joke. I know it's not real long covid as some people are battling much harsher consequences from having had covid.

But, what I'm trying to say in my layman way is, I feel like I get sick differently after having covid. It's more frequent and lasts way longer. I'm currently at the tail end of a ~4 week long "cold" during which it felt like I'd improve/regress each week and it varied from my being completely functional to having fairly bedridden days. It was all just a "common cold", I think; who knows I might have had covid again (I'm not getting tested each time I get sick any more). These "colds" have been happening roughly every 3-6 months the last couple years since I got covid. Prior to that, I'd get sick only about once a year and sometimes 2-3 times without getting sick. Duration of sickness previously was typically 3-5 days, very rarely ever >1 week. Not sure if it's related, but the time of year is off too. I almost never got sick in the summer months before. Where I live it's been above 100F most of the past several weeks and typically I get sick in shoulder season months (Nov-Dec / Feb-Mar for my locale).

[BestGuess]

Thanks for the info I haven't come across it as the post I responded to said around here. Just missed the discussions I guess plus I'm kinda new. I understand not liking how a term gets used yeah, creates more misunderstandings and myths. I gotcha.

[cactusplant7374]

The intervention is Metformin during Covid onset?

[noodlenotes]

I had the same question. Apparently people who had already been taking Metformin for diabetes were at lower risk of severe Covid [1], which explains why Metformin is being studied.

Looks like the same authors found that Metformin as a treatment after Covid diagnosis did not significantly reduce the the risk of hospitalization or death, even though it does reduce incidence of long Covid.

[1] https://www.covid19treatmentguidelines.nih.gov/therapies/mis...

[2] https://www.nejm.org/doi/full/10.1056/NEJMoa2201662

[mikeyouse]

Yep - the long Covid endpoint was a secondary one that was added to the trial once people realized that might be an issue. The original trial was to see whether administering metformin / fluvoxamine / ivermectin would have any impact on disease severity.

https://clinicaltrials.gov/study/NCT04510194?term=NCT0451019...

Spoiler: "None of the three medications that were evaluated prevented the occurrence of hypoxemia, an emergency department visit, hospitalization, or death associated with Covid-19." [https://pubmed.ncbi.nlm.nih.gov/36070710/]

But they already had this population enrolled when Long Covid started becoming an issue, so they extended the study to see what impact the same 3 drugs would have on incidence of long covid.

[Auracle]

For people who are overweight, it looks like. It makes one wonder if it would only work for them, or if long COVID affects them more.

[ryandrake]

Unfortunately, COVID has been irrevocably politicized to the point where mere mention of it produces a 100+ comment thread, so any topic that is even remotely related to COVID already has the battle lines drawn and each "side" stands ready to fight over it. It doesn't seem possible to have a un-politically-charged conversation about the reality of Long COVID because it is still not possible to have an uncharged conversation about COVID.