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'Long Covid': Why are some people not recovering?

87 points| open-source-ux | 5 years ago |bbc.co.uk | reply

129 comments

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[+] jaybrendansmith|5 years ago|reply
I see lots of doubt here. I just got over COVID-19, I had it for around 26 days with very mild symptoms after the first 2 days where my temp never went above 101.5.

However I still have 'post-COVID' symptoms. I'm in my 40s and was very healthy prior: - Unexplained fatigue that happens 12-24 hours after exercise. I have to shut my eyes for 30 minutes, almost like narcolepsy or similar. - Random muscle aches that seem to be slowly going away. - Minor heart palpitations, slowly getting better. - Rare cases where I feel I need to take several deep breaths, maybe twice per day. - Continued GI issues.

Finally, everybody I know over 40 who has had COVID-19, approximately 7 people, have reported these symptoms, some of them marathon runners who can no longer run a mile. Please set your doubts at rest, this is a real thing, not an anomaly, and will have major health impacts to many people over time.

[+] noneeeed|5 years ago|reply
I've managed to avoid it, but several friends have had it and still have some level of impact on their health and fitness months later. As an overwight man in my 40s I was nervous before, but with all these 'long' effects I'm even more worried about getting it, knowing that if I make it through I could still get screwed for months, just as I'm starting to improve my fitness a bit at a time.
[+] me_me_me|5 years ago|reply
I have read report of people not recovering their sense of smell after months post recovery.

We don't have much experience with Covid and post recovery effects yet, so not catching it is my priority (rather than rolling dice and hope for the best).

I wish you full recovery.

[+] 46Bit|5 years ago|reply
> Continued GI issues

Ditto.

[+] tchalla|5 years ago|reply
> Continued GI issues

Can someone tell me what GI is?

[+] fab1an|5 years ago|reply
Good to see some data on how common/uncommon this may be: it seems that 2% of confirmed patients suffer from some form of "Long Covid", which definitely isn't great news, but certainly better than what some overeager media have irresponsibly reported (the Rome study comes to mind, where hospitalized patients where somehow taken to be representative of the entire pool of infected people).

One does wonder about the 'nocebo' factor, too - if you've been told to watch out for lingering symptoms are an infection that certainly affects the way in which you are observing your own body, especially so if you're even minimally hypochondriac. There is an understandable media narrative to portray mostly severe cases (again, understandable from some sort of public health perspective) but that also adds to psychological add-on effects one might face with this disease.

I'm in no way part of the just-the-flu crew, but feel that the OMG-COVID crew hasn't necessarily thought the above aspects through either.

[+] cheph|5 years ago|reply
> I'm in no way part of the just-the-flu crew, but feel that the OMG-COVID crew hasn't necessarily thought the above aspects through either.

The incentives are all messed up for the media to provide a balanced information and with the economic devastation coming down the pipes I think both the flu and COVID will look like a walk in the park.

https://blogs.worldbank.org/developmenttalk/lives-or-livelih...

> Using those somewhat more generous – but still frugal – thresholds, the number of poverty years in the world (235 million) is 54 times the number of lost years.

And yes, without lockdowns things may be even worse, but the fact remains that the biggest impact on lives from this pandemic will likely not be directly from COVID but indirectly from economic devastation.

[+] gizmo|5 years ago|reply
So many people have been infected by covid in the last 9 months that you'd expect a large enough number of infections to coincide with other health problems to make for scary headlines. If somebody has a something as mundane as burnout or depression after catching covid, will people identify it correctly, or will anxiety and relentless doom and gloom news headlines result in a "long covid" self-diagnosis?

Do we have any reason to believe long covid is a real thing? Is this not just anecdotes being blown up by the media that is generally useless at science reporting?

[+] oceanplexian|5 years ago|reply
> I'm in no way part of the just-the-flu crew

One thing I don't get is why saying C19 is "Just another Flu" is somehow taken as downplaying the virus. Seasonal Flu kills as many as 600,000 people annually. Do their lives not matter because they are taken by a regular old virus and not a novel coronavirus? And why doesn't the media report on every strain and mutation of the seasonal flu that could cause "long term effects"?

[+] rattray|5 years ago|reply
Hmm, that's a bit of a rosy interpretation – the article also says this:

> Half of people in a study in Dublin still had fatigue 10 weeks after being infected with coronavirus. A third were physically unable to return to work.

> Crucially, doctors found no link between the severity of the infection and fatigue.

Study here: https://www.medrxiv.org/content/10.1101/2020.07.29.20164293v... 128 participants (49.5 ± 15 years; 54% female)

[+] LeoNatan25|5 years ago|reply
2% is actually a very large percent, considering how contagious the virus is. Many people like to say that all respiratory illnesses produce similar issues, but no other so widespread virus has such high chronic illness remains.
[+] lucideer|5 years ago|reply
The 2% figure is from an app that has been plagued with technical issues[0] since its release.

The article also highlights a study[1] finding over 50% suffered fatigue after 10 weeks and 33% were physically unfit to work. From that study:

> There was no association between COVID-19 severity (need for inpatient admission, supplemental oxygen or critical care) and fatigue following COVID-19

[0] https://www.reuters.com/article/uk-health-coronavirus-britai...

[1] https://www.medrxiv.org/content/10.1101/2020.07.29.20164293v...

[+] ourcat|5 years ago|reply
I know a couple of people who caught Covid-19 back before the summer, who both described the same symptoms after recovering (and testing negative). This was a while before all this talk of 'Long Covid' came about.

Since we're all different, and will all fight viruses in different ways and strengths (depending on health/existing cnditions etc.), there'll be so many variations in how much of a 'toll' fighting it has taken on our bodies (and minds).

Since this ia a 'novel' virus, we can only really base any conlusions on the empirical evidence as it comes in.

[+] djsumdog|5 years ago|reply
> The mean age was 56.5[0]

There are potential long term effects from most infections, especially in the elderly. Other infections can cause long term problems, and it's still super early for COVID to talk about long term effects. I remember getting pneumonia in my twenties and it taking 3 months for my lungs to fully recover.

We still don't understand exactly what happens with Lymes Disease. Is the immune system left in a state where it's continually fighting/reacting to an infection that's no longer present?

The 1976 swine flu vaccine also may have cause neurological issues for up to 4,000 of the millions who received it[1]. Would they have had the same symptoms from an actual infection from the flu? Potentially. It'd difficult to know, but people do have long term issues from other viruses, especially if they're older or have other underlying health conditions. It's not unprecedented.

[0]: https://jamanetwork.com/journals/jama/fullarticle/2768351

[1]: https://www.youtube.com/watch?v=4bOHYZhL0WQ (60 Minutes)

[+] kalaido|5 years ago|reply
I agree. It's like a maginfing glass
[+] mrlambchop|5 years ago|reply
I caught COVID-19 back in Aug from helping out the local schools with their bumpy start into remote learning.

6 weeks later, I am suffering from occasional severe fatigue still - these days, it manifests itself after 8-9 hours or so and results in a crash where I have to sleep for 40mins+. If I don’t struggle through and go to bed then, it will screw up my sleep schedule. During the 2 weeks of COVID, it was way worse and I could sleep 3/4s of an entire day and still be tired.

This is getting better - I push myself everyday just a little more and now can exercise for 2 hours straight and carry on, but it’s night and day different to pre-COVID behavior and I imagine it will be through to Christmas before I am back to “normal” (touch wood).

[+] runemadsen|5 years ago|reply
I'm 6 months into my COVID illness, and I'm still having fatigue and breathing difficulties on a daily basis. It started with severe breathing difficulties, but I was never in the hospital, and it has basically been going up and down in waves since then. X-rays shows that my lungs have recovered, but I don't feel good at all. I'm 37 and in great shape. I am so damn tired of the discussion being focused on deaths: If 2-5% of infected get long-term symptoms like me, it's going to be an absolute onslaught on the health care systems in the coming years.
[+] nso|5 years ago|reply
No idea if it's replicable, but I found that the only thing that ensured my sleep when I was at the stage you are at was to drink tea brewed on fresh oregano leaves (I have them in my garden), mixed with honey. It's something I'd never done before, but it put me to sleep in minutes and let me actually rest.
[+] zigzaggy|5 years ago|reply
I've had a fever every day for over a month. At the beginning they were 101 and up, and my heart rate spiked over 100 for long periods of time (normally I'm in the 60's and 70's). Now the "fevers" are pretty low grade (under 100 but definitely higher than "normal.")

I'm also experiencing the crashes you mentioned - fine one minute and crawling back in bed the next. It's usually in the afternoons or evenings. But as you say, it's much better than before when I slept ALL DAY for several days.

To end on a brighter note, I am back to exercising 45 mins, 3 days a week. And I go biking weekends, for 1.5 - 2 hours. My stamina isn't what it was, but it's building back. I even decided to go ahead with a (virtual) race I signed up for. I'll walk/run with the only goal of finishing.

[+] diegoperini|5 years ago|reply
Thanks for sharing. I wish we reserved one post/comment for people only who has/had COVID019 to hear their experiences. I know there are many people in HN with the disease but their words are scattered around, hard to explore.
[+] e79|5 years ago|reply
I hear this a lot: “it only kills old people” or “it only has a 1.5% death rate.” Many of these statements are followed by the suggestion that we should just let Covid run its course so we can be out of this situation sooner.

We still barely understand Covid. No public health official with an ounce of ethics and concern for their career is going to be in favor of letting a poorly understood virus just rip through entire communities. The death rate is only one part of the equation. As this article points out, scientists are now concerned about the growing number of cases in which severe symptoms stick around or even develop long after infection. When compared to the cold or flu.

We also just recently learned that antibodies only stick around for a few months.

There are reasons that public health officials are being so cautious. It’s not just to be “draconian” for the fun of it.

[+] jnxx|5 years ago|reply
> We still barely understand Covid.

We do not even understand well what it does to the brain of children. It definitively has neurological effects in some people and there could be really undesirable long-term effects we still do not know about.

[+] jonathanstrange|5 years ago|reply
I agree with you and just want to add that anyone who thinks a 1.5% death rate is low fails at elementary arithmetics, since without measures and without vaccine we'd have to expect at least 80% to be infected eventually within 1-2 years.

Luckily, the estimates for the true Infection Fatality Ratio (IFR) are lower, between 0.6% to 0.7%, for industrialized nations. That's still a very high high number if we don't keep the disease in check or don't get a vaccine.

[+] ChrisMarshallNY|5 years ago|reply
I had it early February (!). It may have been a different strain, or the antibody tests are garbage (or both), since they reported negative. There's no doubt I (and a number of friends and family) had it. The symptoms are pretty specific. If I didn't have it, then that's even worse, as it means there's a bug out there, with the exact same symptoms, in addition to COVID-19.

Scary bug. I could def see what I had killing people. I had no idea what it was, back then. I just thought I was getting pneumonia, and it broke, just as I was ready to go to hospital. I'm glad I didn't do that, as I would have just infected a whole bunch of vulnerable people.

Since then, I've had a persistent "throat-clearing" thing. Lots of "harUMPHf." My sense of taste never fully recovered, either (that was the weirdest part of it. I've never had that happen before).

I'm really grateful that it wasn't worse. I know some folks that died from it.

[+] hwillis|5 years ago|reply
> It may have been a different strain, or the antibody tests are garbage (or both), since they reported negative.

Antigen tests are not terribly sensitive. If you get tested to soon or too late your antibody level will not be high enough to trigger a positive result. If your family got them at varied times after infection, or if you got more than one test, it would be very unlikely you hadn't gotten a positive result.

Conventional wisdom is that it peaks ~3 weeks after infection, and is highest for 1-2 weeks around that time. In practice everyone reacts differently and it can be hard to predict. I was infected in March and I'm still testing positive every 1-2 weeks. That's because I had a fairly rough go round, and developed a very heavy immune response. Asymptomatic[1] people may mount a very limited response and never test positive for antigens at all.

> Since then, I've had a persistent "throat-clearing" thing. Lots of "harUMPHf." My sense of taste never fully recovered, either (that was the weirdest part of it. I've never had that happen before).

It took me an inhaler and 4+ months to clear out my lungs. Constantly coughing up thick sludge. That inhaler was a godsend during the worst part of it- helped me move stuff around when I needed air most. I still have breathing issues (damage to the blood vessels), but I can fill my lungs easily now.

[1]: NB that due to the way lung problems work, "asymptomatic" cases can still inflict a lot of damage. Since your oxygen demands and supplies are constantly changing -due to exertion, air quality, altitude etc- your body is used to quietly adjusting your heart rate and breathing rate up without you noticing. Your lungs can go through some serious losses of efficiency and put a lot of strain on your heart before you notice. This goes double for people with high anaerobic tolerance; if you run a few times a week you will just ignore co2 buildup to a much higher level than a couch potato.

[+] akvadrako|5 years ago|reply
I have not researched this heavily, but the tests do not seem to be very good.

It seems like RT-PCR is more sensitive than the IgM/IgG antibody test for mild, moderate and normal group.¹ And a negative result of a RT-PCR test a few days past the peak would reduce our estimate of the relative probability that a case patient was infected by only 3%.²

[1] https://www.researchgate.net/publication/343570266_Compariso...

[2] https://www.acpjournals.org/doi/10.7326/M20-1495

[+] just-juan-post|5 years ago|reply
> I had it early February (!)

> or the antibody tests are garbage (or both), since they reported negative

So you didn't have it?

[+] mikewarot|5 years ago|reply
Consider that most efforts are on slowing spread, not eradication. This is a bigger problem than most people realize.
[+] logicOnly|5 years ago|reply
Yes, our Politicians and physicians failed us here. Epidemiologists have been correct in their pandemic physics.

>Harsh violent lockdown for 2 or 3 years can eradicate coronavirus.

>Soft lockdowns "flatten the curve". From the NYT study, this reduces death by 12% due to availability of ventilators, and find potentially other helpful drugs.

>No government lockdown, where people must be personally responsible for their own health. This sacrifices the old and obese that refuse to comply with voluntary lockdown.

And all of this effort is focused around a few percentage of the population, which is disproportionately unhealthy.

[+] walterbell|5 years ago|reply
https://www.spiked-online.com/2020/10/06/the-exploitation-of...

> A post-viral syndrome can follow many types of viral infection, from the common cold to influenza and pneumonia. Yet no one has compiled and publicised data sets for those suffering from such a syndrome, let alone anointed it Long Flu or Long Cold ... There is a reason why the threat of Long Covid is being talked up right now, when the serious but manageable nature of Short Covid is becoming increasingly clear. It provides the often draconian response to the pandemic with the justification it increasingly lacks – that is, something for all of us to fear.

[+] e79|5 years ago|reply
If you read the article, what makes this different is explained. The severity and number of different post-covid symptoms is alarming scientists. It’s unusual and therefore worth reporting.

Some journalists are without a doubt hyping this up, but to blanket long covid as some sort of media hoax can do a lot of harm. People aught to know that their symptoms may linger and even worsen far after two weeks. Censoring this just because you don’t like it or it scares you is harmful.

[+] lend000|5 years ago|reply
The HN crowd is not one to support conspiracy theories, but if the CCP were to strategically release a virus into the world, what better way to give them a competitive advantage than to give a non-negligible percentage of their global competitors chronic fatigue?

Speaking as someone in the tech space still suffering from fatigue and brain fog (with no real signs of improvement) 7 months after infection. My productivity has certainly gone down.

[+] namarie|5 years ago|reply
Why would they release it among their own people first?
[+] jnxx|5 years ago|reply
> but if the CCP were to strategically release a virus into the world, what better way to give them a competitive advantage than to give a non-negligible percentage of their global competitors chronic fatigue?

Viewed through that lens, it is surely a cunning plot of Mother Earth do bring down our insane resource consumption, no? Maybe a bat conspiracy against humanity?

[+] Madmallard|5 years ago|reply
Iatrogenesis from hydroxychloroquine and other drugs probably contributes in some cases.
[+] Izkata|5 years ago|reply
Specifically for fatigue, not so much the other symptoms, I'm wondering if there's correlation with it and places that have had long lockdowns. Could it be that when people stop normal activity, they lose an unexpected amount of muscle strength?
[+] suby|5 years ago|reply
The descriptions I'm reading from people who say that they are suffering lingering effects from covid do not seem to match this hypothesis. In this thread for example someone described eating as being exhausting after having covid. Even after years of inactivity a person should not be experiencing this kind of difficulty from eating.

You'd also expect to see these same complaints from people who have not gotten covid which I'm not seeing.

[+] cameronbrown|5 years ago|reply
Unpopular opinion for sure... But I think you're right, in that, nobody is considering other costs of lockdown.
[+] oxymoran|5 years ago|reply
Because anxiety is a hell of a drug.
[+] DoingIsLearning|5 years ago|reply
Psychosomatic speculation is a possibility but the evidence should make you cautious.

The previous SARS-COV1 epidemic in 2003, created lung scaring and reduced lung function in patients, this damage was persistent even after 7 years post-recovery. [0]

There is zero evidence that the reported endothelial damage in SARS-COV2 is any 'milder' than SARS-COV1.

[0] https://pubmed.ncbi.nlm.nih.gov/27501327/