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The burden of Long Covid “so large as to be unfathomable”

122 points| harryleeming | 2 years ago |rnz.co.nz | reply

211 comments

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[+] treprinum|2 years ago|reply
I spent two years in bed, sometimes sleeping 16 hours a day and feeling like passing out just from walking 100m. All my tests were fine, all doctors thought it's just "anxiety" and basically ignored me until I had what looked like a stroke when they started taking it slightly more seriously. However, given all the tests were OK I went in circles from one doctor to another when I had better days, or being completely bedridden when I hadn't.

Then one day I got finally upset by my deteriorating state, started taking about 50 different supplements with any "word-of-mouth" evidence from Reddit forums from folks claiming it helped them, started slowly doing daily rowing machine workouts and within 1 month I was 1000x better.

I really think medical science gets many things wrong and knows only a small piece of puzzle on how the human body works, and people with long covid are stuck in that knowledge gap.

[+] w______roy|2 years ago|reply
I can relate about physical exercise—I had debilitating long covid symptoms for about six months with no end in sight. Could not work out, had to plan climbing stairs around my schedule so I'd have 20 minutes after to recover. Until I was forced to go on a business trip to Europe for two weeks where I was walking 20-30,000 steps a day and carrying luggage everywhere. Afterwards I felt 80-90% better, it was crazy. Still no way to know if that was just coincidence or not, but I keep seeing anecdotal stories about physical activity being key.
[+] 1over137|2 years ago|reply
>I really think medical science gets many things wrong and knows only a small piece of puzzle

That's certainly true, but medical science is well aware of the incredible benefits of physical exercise and the power of placebo.

[+] whimsicalism|2 years ago|reply
I think it is certainly true, but I also think that lay people significantly underestimate psychosomnia and the power of placebo and having a more active lifestyle.
[+] rzwitserloot|2 years ago|reply
> I really think medical science gets many things wrong and knows only a small piece of puzzle on how the human body works, and people with long covid are stuck in that knowledge gap.

The vast majority of medical researchers agree with you.

> started taking about 50 different supplements with any "word-of-mouth" evidence from Reddit forums

Just taking every chemical under the sun because some random jane said 'hey it worked for me' is not better, obviously.

Anti-quackery activists and doctors in general are telling you that taking a boatload of supplements based on ads and shills is unlikely to help (you got real, real lucky here), and is quite likely to cause serious damage, and also takes you mostly out of the medical sphere of influence entirely - whatever weird results come up when medical professionals run some tests are now tainted by all the stuff you are taking.

An entirely separate problem is that a combination of an ever expanding menu of medical interventions that we (humanity) knows about and an aging population means that healthcare as a principle is effectively unaffordable without massive tax increases which the population votes against. Hence, the healthcare that can be provided is gruff and fast, and cannot cater to complicated cases like yours. Which has to be very frustrating for you.

[+] kdmccormick|2 years ago|reply
Between the supplements and the rowing, do you have a sense if one or the other had a greater impact?

Asking because "take a multivitamin" and "exercise daily" seem to be very standard pieces of medical advice. "Take 50 specific supplements", not so much.

[+] seanmcdirmid|2 years ago|reply
> I really think medical science gets many things wrong and knows only a small piece of puzzle on how the human body works, and people with long covid are stuck in that knowledge gap.

Medical science is definitely limited. Studying a human system is essentially reverse engineering combined with something we can’t create in the first place. So doctors accumulate data, somehow make progress on life expectancies, but still a lot is unknown, and they don’t really claim otherwise.

[+] LudwigNagasena|2 years ago|reply
What supplements have you been taking and what is your diet?
[+] 300bps|2 years ago|reply
What are the clinically significant differences between long covid and things like fibromyalgia and chronic fatigue syndrome that have been around for quite a while?

I don't appear to be the only one asking these questions.

https://www.jwatch.org/na56219/2023/06/15/long-covid-and-chr...

https://www.publichealth.columbia.edu/news/long-covid-really...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10117846/

[+] stefs|2 years ago|reply
i always thought long covid is a variant of ME/CFS - it just got it's own name due to the novel virus, while non-covid cases of CFS are caused by viruses which usually have a far lower chance of causing CFS (epstein-barr/herpes/...). no idea if that's actually the case though.

"A review of long COVID research found half of those affected met diagnostic criteria for ME/CFS."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9839201/

[+] whimsicalism|2 years ago|reply
They're very similar and if you work in these fields you wink wink know what it means that the disease profiles are so similar.
[+] mips_r4300i|2 years ago|reply
Post-viral sequelae have been poorly understood for many years.

1. It's hard to tie together the cause and later effects/symptoms. Did someone get a viral infection? Common cold? Flu? A bacterial infection? People who aren't familiar with this typically have just felt sick, and sometimes the trigger can be a subclinical infection they don't notice.

2. Conventional medicine is bad at acknowledging, researching, and treating chronic conditions. Need an arm chopped off? Thyroid irradiated? No problem, surgery is excellent. Need pills to mask symptoms for years leaving the root cause untreated? Again, modern medicine has you covered. But if yout CBC panels are OK and you just have a malaise, nobody knows what to do.

3. Doctors have a somewhat justified hubris in that if something didn't exist in their med school, it must not exist at all. Sure, people come in with WebMD printouts and can claim all sorts of nonsense, but this leads to kneejerk defensiveness instead of an open mind.

I was infected in 2014 with some unknown, probably viral infection, which cause my thyroid to become inflamed for several months. This can also happen with mono. Anyway, this caused serious, wide ranging effects in my body, specifically causing autoimmunity. I now had serious food sensitivities I never had before. Not knowing this, I kept eating these foods and after 3 years I was so immensely fatigued and brain fogged and dizzy I could barely walk to the mail box.

After 6 doctors and $20k of diagnostics I finally some solutions. Recovery took years, increasing fast at first and slowing down later. My recovery amounted to cutting out several key foods/drinks out my diet and supplementing for a while to fix deficiencies caused by all this.

My advice if you have this is to be proactive. Nobody will fix this for you. Your doctors probably won't care, so find one that will. I found a doctor that would talk for 1-2 hours in an appointment and go over everything I was learning (yes, she was expensive) Read as much as you can, avoiding the innate human desire to find a magic bullet solution (there is none). Follow up on what your doctor told you and research the snot out of everything you heard.

Long COVID is the first time that cause and effect have been linked and known for so many people. Unfortunately it seems this is exactly what it will take to get taken seriously by the medical profession.

[+] zingababba|2 years ago|reply
Still suffering from this myself. I used to train for hours a day nearly every day (BJJ/Calisthenics/KettleBells.) Totally obliterated my exercise capacity after I got Covid twice, first time acute symptoms lasted for 6 weeks, second time was shorter at 3 weeks. Years later and I'm still not the same. It hit hard.
[+] mikeyouse|2 years ago|reply
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.

[+] AuryGlenz|2 years ago|reply
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.

[+] svnt|2 years ago|reply
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...

[+] DrBazza|2 years ago|reply
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|2 years ago|reply
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|2 years ago|reply
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|2 years ago|reply
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?
[+] cactusplant7374|2 years ago|reply
The intervention is Metformin during Covid onset?
[+] ryandrake|2 years ago|reply
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.
[+] bigmattystyles|2 years ago|reply
I’ve long been watching ‘physics girl’ on YouTube and what’s happened to her with long Covid is awful. When you hear those stories, you can’t help but think of all those affected.
[+] monero-xmr|2 years ago|reply
There is a lack of hard scientific evidence definitively proving this. However you may know in your bones that this is real, from lived experience or from people you know. Please keep that in mind when you dismiss other things that lack definitive scientific evidence. We as humans seem to pick and choose which currently unverified things to believe and which to dismiss.
[+] retrac|2 years ago|reply
I cannot comprehend a position of total long COVID denial, though I have encountered it online. Every virus you can think of that causes acute illness, can cause long term or even permanent damage. Sometimes rarely, sometimes often. Even the mildest common cold viruses, can, in very rare cases, be severe enough to cause pneumonia which causes scarring which leads to permanent loss of lung function. Hepatitis A is usually cleared without issue but sometimes significant liver scarring happens. The poxes can be cleared by the immune system but often immense scarring of the affected tissues happens. Viral meningitis...

For COVID to cause severe illness in a few % -- enough to kill in rare cases -- but to not cause permanent lung or heart or kidney damage etc. in some significant percent who got very sick is implausible, even incoherent with all other theories about how viral diseases cause disease.

[+] strken|2 years ago|reply
I think it's less "this is bullshit" and more "this is receiving far more attention than long influenza or long any other infection". We've fixated on long COVID to a degree that might not be productive and which - if it has a psychosomatic component in some cases - might be causing more long COVID.
[+] j45|2 years ago|reply
Just because science hasn’t proven something or understood it doesn’t mean it’s not real or doesn’t exist.

If we lived solely by this definition there could be a lot of obvious things in the brain that could be canceled.

I understand your point but science is usually playing catch up with covid because it’s been so fast and far out of the gate.

Just because we don’t have the scientific understanding doesn’t mean it doesn’t exist.

In case you’re curious, lots comes out about long covid regularly.

“Gene linked to long COVID found in analysis of thousands of patients The first genome-wide search for long-COVID risk factors could pave the way for larger studies.”

https://www.nature.com/articles/d41586-023-02269-2

“‘Brain fog’ of long Covid comparable to ageing 10 years, study finds Symptoms of infection can last two years”

https://www.theguardian.com/world/2023/jul/21/long-covid-bra...

[+] robnado|2 years ago|reply
Following my first infection with COVID, I developed mononucleosis as the infection reactivated the Epstein-Barr virus in my body, which gave me many of these symptoms. I have since found many scientific articles that discuss a link between the Epstein-Barr virus and long COVID. I'm always surprised that the Epstein-Barr virus is rarely talked about in popular news media when long covid is brought up.
[+] artimaeis|2 years ago|reply
I think you mean there's a lack of broad consensus among scientists as to the root cause. There's scientific evidence aplenty. What constitutes as evidence of illness, if not ill people?
[+] AndrewKemendo|2 years ago|reply
>We as humans seem to pick and choose which currently unverified things to believe and which to dismiss

As it was in the beginning and forever will be

It's physically impossible for humans to agree on an "objective truth" because human sense perception (at least with respect to differentiation of truth claims) is not uniform and the variety of human experience - despite variance being relatively small when measured (eg. normally distributed) - is dis-joint enough that insignificant variance in conceptions have historically led to wide scale clan focused war.

For example the theological difference between protestants and catholics is minute when plotted against all other theistic conceptions. Yet that difference is large enough (within those two groups) to drive violent, inter-generational, centuries long conflict.

It's actually pretty interesting when you start paying attention to how groups and subgroups work together or fight respectively in different contexts. I have three kids who will torture each other at home, but they clan up and protect their own or alternatively cooperate, when in social situations with other clans present.

This is an intractable and non-differentiable feature of human society and we want to assume that it's vestigial when in fact it's the core conceptual drive that creates society - for better or worse.

[+] iainctduncan|2 years ago|reply
come again? Long Covid has been documented in numerous top scientific journals. My understanding from my scientist friends is quite the opposite. It is well established.
[+] thenerdhead|2 years ago|reply
There is hard empirical evidence. Plenty of scientific evidence now coming out as well given its been a few years to research initial cohorts. But to wait to verify scientific evidence is just foolish when this is affecting a grand scale of human beings.
[+] OneLeggedCat|2 years ago|reply
Man is a credulous animal, and must believe something; in the absence of good grounds for belief, he will be satisfied with bad ones.
[+] OO000oo|2 years ago|reply
Additionally, mathematics and scientific evidence are no match for the influence of power. The tendency of capital accumulation under capitalism is exceedingly straightforward, but the life of one trying to find peace with that reality is too painful to bear.
[+] downWidOutaFite|2 years ago|reply
False. There is tons of hard evidence about long covid including in this article.

If I were you I would try to examine why false beliefs are being accepted into my model of the world.

[+] andai|2 years ago|reply
>The gold standard to test for viruses lurking in the body is with a gut biopsy, but "it wouldn't be ethical to go around taking out bits of people's guts to have a look," Altmann says. So new ways to test this would need to be worked out.

Isn't this standard procedure for cancer testing? Or is it a more invasive procedure?

If someone's experiencing symptoms as debilitating as the article says, I think they'd be OK with some short term pain in exchange for some forward progress.

[+] Glench|2 years ago|reply
> Different patients experience different symptoms from a diverse set of symptoms associated with long Covid, which could mean potential treatments might only relate to a particular sub-group and "one drug or antiviral treatment might be asking too much".

Between the different impacts on different people and the difficulties diagnosing, long Covid could represent an enormous blessing in terms of our scientific understanding of the human body as well as treatments. When your models are shattered, you have to build new ones that explain all the data better.

[+] thenerdhead|2 years ago|reply
Went through two bouts of long covid so far.

https://jondouglas.dev/long-covid/

In the vein of "The Death of Ivan Ilyich", I've come to appreciate life more through illness and suffering. I've also had challenges battling the three horsemen of boredom, loneliness, and helplessness like you would at any nursing home. But I have to say, the way the world has handled this issue was especially discouraging early on.

The medical system felt especially useless (and still feels that way), but it does seem that help is on the way and there's many treatments and funding in the pipeline for the next few years.

Also this is getting plenty of media attention and research is published almost everyday to convince those who think long covid is "all in your head" / psychosomatic.

I will live every day for the rest of my existence with deep empathy to those with unknown/invisible illnesses. For when people treated me like I was "fine" when I told them I was very sick, I felt just like Ivan Ilyich until he met Gerasim. I think we need more Gerasim type people in our lives who can see people suffering and help out knowing that someone will help them when it's their turn.

[+] thebooktocome|2 years ago|reply
Long COVID pretty much obliterated the career of a mentor of mine. She went from being a competitive athlete in her late sixties to a home-bound invalid in her early seventies. You know a health condition is grievous when it makes a mathematician give up lecturing.
[+] eggy|2 years ago|reply
Immediately thought of "Joe Versus The Volcano" scene[1] where he is diagnosed with a brain cloud. "Phew. Brain Cloud!? I knew it!"

Close to a "brain fog" I guess.

[1] https://youtu.be/M77TmgZ540E

[+] getmeinrn|2 years ago|reply
>And yet we know perfectly well that there were many people who were vaccinated who did get breakthrough infections and some of those have gone on to get long Covid, but we know that in those breakthrough cases in the vaccinated people, your chance of long Covid is further reduced perhaps by another 50 percent.

As far as I see, they aren't referencing a specific study. But they are clearly making a connection between your long covid chances and vaccination. Does anyone have a link off hand to this data?

[+] stefs|2 years ago|reply
i'm interpreting this as: they're making a connection between reduced (but not eliminted) long covid risk after vaccination (compared to a higher risk when not being vaccinated at all).
[+] Proven|2 years ago|reply
> The best way to not get long Covid is to not get Covid, and the best way to not get Covid is to be well vaccinated and boosted and have a good level of antibodies to stop the virus getting in.

I know people who got multiple jabs and have had Covid-19 several times already. These suggestions are useless.

> in those breakthrough cases in the vaccinated people, your chance of long Covid is further reduced perhaps by another 50 percent.

If it's reduced by only 50%, with Long Covid being so rare I'd rather take my chances and remain unvaccinated!