Covid-19: What do we know about “long Covid”? | Hacker News Reader

Covid-19: What do we know about “long Covid”?

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38 pointsnico_h49 comments

We really need two things:

1. Better systems for preventing transmission of disease generally as our cultural default.

2. Better models for helping people genuinely recover, something modern medicine doesn't actually address for most diseases.

We have physical therapy for certain injuries. We don't really seem to have something similar for infections. We think just treating the infection per se is all we need to do. We generally do not school people on how to resolve the issues left behind from antibiotic use, chemotherapy, etc.

1: Masks! that seems to work.

2: Physiotherapy? Yoga?

3: there are articles about rehabilitation centers for ex-covid patients, in europe + UK at least.

1. Are you suggesting masks as a cultural norm for all eternity? I hope not.

I'm talking about sustainable permanent changes. I like contactless takeout, like Little Caesar's pizza portal as one example.

2. Neither of those are for infections per se.

3. Thanks. I will look for such, but it probably sucks if the past 55 years of my life is anything to judge by.

> 1. Are you suggesting masks as a cultural norm for all eternity? I hope not.

Well in some Asian cultures it was already normalized to wear a mask when you have any kind of symptoms of anything contagious. I was hoping that convention would move west even before this pandemic happened -- so I hope it stays with us.

I think we are already far too accepting of the idea that it's just normal to be germy and ill. I wish that expectation would change. I don't think it has to be that way.

There is a war between your immune system and your environment, with constant escalation. Every time people meet they exchange germs. Most often it's something your immune system has already seen, but sometimes you're tired or it's something that's mutated or that's brand new.

Unless we live in a literal bubble with filtered air, we're going to be germy.

The safest way to not be germy is likely to live in a sunny dry place away from people but then it's usually hot and maybe amazon doesn't deliver.

Sure. We are always germy. But if you feel explicitly under the weather and you have to go out to the store to pick up something, it would be great if you wore a mask - even if it isn't covid times.

I've never done that. I've always just gone to the store. I didn't even really think about it, like of course I'm not going to be wiping my nose and touching things, but I'm also not sanitizing my hands the instant I walk into a grocery story - something I now do every single time.

I do wonder what the effect would be of just having sick people wear masks when they go out?

I have a permanently compromised immune system. I don't live in a bubble. The degree to which my life revolves around germ control is not immediately apparent to most people.

Suffice it say that I don't agree with you. At all.

True eradication of most germs is probably impossible, given how hard it was for smallpox and how hard it currently is for polio. But I don't think there's any inherent reason why all remotely serious diseases couldn't be driven to the level of tuberculosis - something that exists, endemic in every country, but at such a low level that most people have no real expectation they might catch it.

We can treat tuberculosis with antibiotics. Do you think we can just do the same thing with e.g. malaria? The only diseases we've eliminated have been from vaccines, and the diseases we control tend to be from either relatively easy behavioural changes or medicine.

I've been less sick this year than most. I'll probably continue wearing a mask on public transit at the very least. I'm not quite clear what your hope is about the normalcy of being germy and ill, but I think that statistically, we must accept that any group of 1000 people will certainly have somebody asymptomatic but shedding some virus or another. Just as the younger generation is more accepting of wearing gloves/condoms during sex where they receive proper sex ed, wearing masks may continue to be seen as a common sense measure for the foreseeable future.

I was sick in March for two weeks with some kind of Bronchitis. I don't think it was Covid based on the description of the symptoms.

But since working form home, neither me, my wife, or any of my kids have gotten a cold which is kind of amazing.

I haven't had a cold in years. I still have issues because of my genetic disorder, but, yeah. Colds can be avoided and it's wonderful.

1: I hope not either, but in the mean time, if it works and the alternative is long covid or other forms of diseases and permanent disability, it would be a small price to pay. Plus I'm sure there will soon pop up a cottage industry of fashionable masks you can bling to your heart's content.

Maybe we'll replace masks by astronaut's helmets like in all some dystopia games, with lights inside to show our face like in SF movies (so they show the actor's face, glare be damned).

I have an incurable serious condition. My little family lives with a lot of best practices that don't involve anything like masks or helmets.

I keep wondering if there's any way to export those practices to the world at large but it seems extremely unlikely given the open and aggressive hostility I'm met with for any suggestion whatsoever that there might exist a better idea than masks.

What is your suggestion for a better idea than masks for the current respiratory pandemic?

We should be focusing more on not touching our faces and keeping a sufficient distance over masks.

People seem to treat masks like a plus 2 magic item in the game of Pandemic. Once they have one on, they think they are exempt from the need to keep their distance. They also tend to touch their face more, not less, because they fiddle with it etc.

I had some utter and complete asshole blow his nose under his mask standing next to me in a store. I think "don't blow your nose in a crowded public space" would be a vastly superior rule to "wear a mask."

> Better systems for preventing transmission of disease generally as our cultural default.

That's a great way to turn our immune systems to rubbish. In a normal set of circumstances, we get sick and we recover. After a lot of these long-term lockdowns end, I think you're going to see a lot of people getting sick from regular bacterial infections at a higher rate.

Look at what happened when peanuts were removed from a lot of schools in the US to help kids with peanut allergies. More kids developed peanut allergies due to not having exposure (see Coddling of the American Mind)

Except for the fact that allergies are a form of an overactive immune system, so that actually completely countermands your point.

Are there potential concerns with finding ways to prevent transmission of disease? Yes, for sure. Are they a systemic weakening of a society's immune system? No, it's not. If anything, the danger is in preventing disease to the point that lots of folks develop auto-immune disorders.

Regarding your first point, the likelihood of a given infectious disease propagating is partly related to the susceptibility of the population. That’s what makes a novel coronavirus so much more likely to become a pandemic.

We know, for example, that cross-immunity from other coronavirus strains do provide some level of immunity to SARS-CoV-2.

Another area of study is how decreased exposure to diverse set of microbes can result in increased incidence of autoimmune disease, and asthma.

While one angle to reduce the spread of disease is to prevent exposure, the other equally important angle is to avoid infection even with exposure (immunity).

I’d be very cautious about recommending population wide masking for extended periods. Our immune systems function by being constantly exposed and tested, and the system can break down if it isn’t provided with a diverse set of challenges to strengthen and build up immunity.

For your second point, I strongly agree that western medicine is particularly inept at providing care beyond treating acute symptoms, particularly chronic/sub-chronic conditions that tend to describe “how we all feel” and that don’t come with a definitive diagnostic test to reference in an insurance claim.

"nearly nine in 10 patients (87%) discharged from a Rome hospital after recovering from covid-19 were still experiencing at least one symptom 60 days after onset. "

I don't understand how this illness is not taken more seriously in the west given how little we know about it and what little we know tell us it's not a recover / die kind of illness and more like a bell curve with recover / suffer forever / die and suffer forever seems to be the fat part of it.,

Wouldn't you expect long-term side effects from hospitalization that likely involved a ventilator and sedation? Not an expert here. Maybe someone else can chime in?

IIRC ~20% of covid hospital patients were on ventilators at the beginning of the pandemic, and that has gone down as we've learned more about treatment. You can't assume that people were on ventilators just because they were hospitalized.

This is presumably only one aspect of “long Covid”, but a study [0] that was making the rounds a couple weeks ago found this (quoted from the accompanying editorial)[1]:

> ”In 100 recovering patients included in the study, 67% of whom recovered at home, evaluated a mean of 71 days after confirmed COVID-19 diagnosis, 78% had demonstrable cardiac involvement via cardiac magnetic resonance imaging, 76% had detectable high-sensitivity troponin, and 60% had evidence of active myocardial inflammation by abnormal native T1 and T2.”

> ”...if this high rate of risk is confirmed, the pathologic basis for progressive left ventricular dysfunction is validated, and especially if longitudinal assessment reveals new-onset heart failure in the recovery phase of COVID-19, then the crisis of COVID-19 will not abate but will instead shift to a new de novo incidence of heart failure and other chronic cardiovascular complications.”

In other words, even mild cases of Covid-19 are very frequently resulting in heart inflammation and other forms of cardiac injury.

[0]: https://jamanetwork.com/journals/jamacardiology/fullarticle/...

[1]: https://jamanetwork.com/journals/jamacardiology/fullarticle/...

[2]: (another editorial, easier read) https://www.statnews.com/2020/07/27/covid19-concerns-about-l...

Where do you get the information that "suffer forever or die" is the fat part of it? In my anecdotal acquaintances none of the 5 cases I know of (2 with mild hospitalizations of just over a week) fall under that "fat" part of the curve

> Where do you get the information that "suffer forever or die" is the fat part of it?

Presumably they're referring to the 87% number that they quoted. But importantly that's 87% of hospitalized patients, and only a small minority of cases are hospitalized, so the number doesn't say much about the typical case.

yeah, I might have misread that . There was the interview with Mr Topol in the Nautilus link earlier on here that mentioned 10% to 80% suffer from Long COVID, so I searched and found this article.

However, there is anecdata that non-hospitalized patients also suffer from Long COVID as seen in this thread.

I would be interested in more broad exploration of the real scale of this aspect of the illness.

we have a general inability to deal with long-term, insidious effects of all kinds. This holds for covid, it holds for global warming, it holds for economics (see US shortsightedness w.r.t the semiconductor industry). It's baked into the political system and into our culture. People have far too simplistic a relationship with time.

> People have far too simplistic a relationship with time

This sounds like projection. I think humanity has a very complicated relationship with time and does handle long-term risk more than you're giving credit.

Hospitalized pneumonia patients are generally told to expect 3-6 months for a full recovery. I don't mean to imply that's good, of course it's a terrible thing to experience, but it's just not surprising that people hospitalized for a serious infection would show persistent symptoms. What concerns doctors is persistent symptoms among patients that were never hospitalized and symptoms not typical of pneumonia.

Because the vast majority of these patients were old, and the elderly often have lasting symptoms from any serious infection. Any viral infection can cause long term issues if you have a compromised immune system or are elderly.

I've read the UK case study which had 60+ subjects and many of those under 60 were listed as "high risk" professions (they didn't list the professions due to privacy, but I'm guessing it's likely front like health care with high exposure amounts).

The biggest source of transmission is still the home. You're around someone who is breathing out large viral load. This might be why we're seeing the huge uptakes in Texas, Florida and Southern California: people indoors all the time because air conditioning.

There are other diseases with long term effects in only some people: Ticks and Limes disease is a good example.

I think we might be seeing something similar to Limes here.

If you're interested in or even doubting the long term effects, follow one of the larger (91k+ and growing) survivor groups [0]. It is anecdotal, but the stories are very real and quite intense. Even odd things that you don't hear about in the news, like excessive burping [1] and of course, the heart breaking children tag [2].

You don't want this thing if you can help it.

[0] https://www.facebook.com/groups/COVID19survivorcorps/

[1] https://www.facebook.com/groups/COVID19survivorcorps/search/...

[2] https://www.facebook.com/groups/669615740453955/post_tags/?p...

> It is anecdotal, but the stories are very real and quite intense.

They are all real, in the sense that they are stories being told, but I think deriving any kind of conclusion from that kind of forum is not a great idea.

Self-diagnosis (of the particular “long term effect”), general misinformation and paranoia, and self-selection into an online forum of like-minded folks seems to produce consistently misleading results.

If you pointed to an anti-vaccination forum, you’d also see a lot of certain people with real stories.

Selection bias is also a huge issue.

I most likely had it in March. It seems to have reduced my symptoms from some other long-standing issue.

I hesitate to mention that at all because I already get so very much unwarranted hatred. My only point is that press coverage is already biased and survivor groups explicitly are aimed at collecting up people having a hard time.

I don't know how we make real progress. I do know most "support groups" are horrible shit shows where you can't do any real good for fear of being accused of "victim blaming."

Social garbage is a huge barrier to doing anything good for any health issue.

Correct about drawing conclusions, which is why I mentioned that it is anecdotal.

That said, before I mentioned it, had you heard about the burping issue? I sure hadn't.

This is all grain of salt, but given how novel this thing is... pretty much the only information we have to go on at this point is from forums like this. Therefore, I think it is a valuable resource that should not just be discarded or ignored.

Over time, this will of course get distilled down into real medical research and studies, but it is still interesting to listen to today.

Groups like that are always populated by people with the worst of the worst outcomes. There's no indication of how likely these problems actually are.

On the other hand, those with conditions like fibromyalgia and chronic fatigue syndrome were relegated to groups like that and it's only been as of late that they've been taken more seriously. We're unfortunately seeing the same thing happen to a lot of legitimate pain patients, as they're easier to dismiss than those with obvious presentations of symptoms.

Yeah.

I'm hoping at some point (even if 30 years from now) there is testing for pretty much every flu/cold/etc. I wouldn't be surprised if having an ordinary flu causes future medical problems (or an increase chance of future medical problems) in a way that may be small enough now it is not detectable.

This is specifically why I mentioned that it is anecdotal.

It's possible someone got excessive burping a month let's say after they recovered from covid. How do we know those events are related? In a month all kinds of medical problems could happen in a sample size of 90,000 or w/e the amount was, that could be completely unrelated.

Keyword: anecdotal

The reports of pulmonary, neurological, and cardiac damage are pretty troubling.

Ed Yong's Atlantic article about long-haulers is excellent: https://www.theatlantic.com/health/archive/2020/06/covid-19-...

Eric Topol's twitter is an excellent source for Covid science coverage: https://twitter.com/EricTopol

More and more it's clear to me that the appropriate historical analog to Covid19 is not the spanish flu. It's polio.

Notably, there is still no curative treatment for polio. If you do contract it, it's still a roll of the dice whether you recover fully or develop paralysis.

and a ~10% CFR, whoof.

Although a direct comparison is hard, because most polio cases are believed to be asymptomatic but broad screening is less common.

well, the first part of that's shared, anyway.

I know of at least one "long hauler." The descriptions they give are horrific.

Welcome to the newest "pre-existing condition" in American health care.

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