17 ms·

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

122 points by harryleeming 3y ago

ARandomerDude 3y ago
[flagged]
- GonGonBungaBoom 3y ago
  [flagged]
- jimbob45 3y ago
  COVID was feared to mutate into something dangerous and that's why we took it so seriously. The Spanish Flu started out similarly innocuously and then turned into something terrible. That's what we were trying to (and succeeded at being able to) avoid.
  - smorrow 3y ago
    > That's what we were trying to (and succeeded at being able to) avoid. What did he mean by this?
  - deleted 3y ago
    [deleted]
  - FormulatedEdits 3y ago
    Sorry, but that’s not the narrative that was all over the news at all. If that’s what the powers that be were thinking they didn’t tell us so!
    - wredue 3y ago
      They most certainly did. The main point that was pushed, however, was that health infrastructure simply could not handle Covid, and that without suppressing its transmission, many more would have died.
    - last_responder 3y ago
      Guess you were watching some right wing garbage. This was always talked about.
      - FormulatedEdits 3y ago
        The BBC isn’t typically considered right-wing garbage, except perhaps to consumers of extremely left-wing garbage. I promise you that while it may have been talked about, it was never the main or even a major part of the story*. The comment I’m replying to (yours I guess from the attempted burn) implies heavily that it was the agreed-upon and media-promoted main strategy, which is an obvious falsehood, hence the downvotes that comment received. Maybe you think this site is all right-wing too? (Not untrue tbh, depends on the issue at hand.) *in my memory, which is fallible to be fair
  - deleted 3y ago
    [deleted]
- lucasmullens 3y ago
  Who said it was the new bubonic plague? Even the most pessimistic people didn't claim it had that high of a mortality rate. No one is asking you to "comply" with anything, this is just an article about a study.
mikeyouse 3y ago
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/PIIS1473-3099(23)00299-2/fulltext 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.
- cactusplant7374 3y ago
  The intervention is Metformin during Covid onset?
  - Auracle 3y ago
    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.
  - noodlenotes 3y ago
    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/miscellaneous-drugs/metformin/ https://www.covid19treatmentguidelines.nih.gov/therapies/mis... [2] https://www.nejm.org/doi/full/10.1056/NEJMoa2201662 https://www.nejm.org/doi/full/10.1056/NEJMoa2201662
    - mikeyouse 3y ago
      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=NCT04510194&rank=1 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/ 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.
thebooktocome 3y ago
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.
- spywaregorilla 3y ago
  [flagged]
  - hef19898 3y ago
    Why not both?
    - spywaregorilla 3y ago
      Not doubting. Just curious. Competitive athlete in your 60s is impressive, even if age bracketed.
  - thebooktocome 3y ago
    She was a diver/swimmer and is also a mathematician, yes. I wish I had half her energy, lol.
    - spywaregorilla 3y ago
      A diver at 60? Wow that sounds very arduous, if not just risky. I don't think I'd ever heard of people continuing to do competitive diving into their later years.
- ck2 3y ago
  It has ended dozens if not hundreds of elite athlete careers but also Olympians. Newspapers and specialty websites are full of these stories over the past few years but the public is either willfully ignorant or feel like denial is some kind of superpower. Has nothing to do with lack of fitness, anyone can get it. One big risk factor though to be clear is not the ONLY risk factor is literally genetics so that much is unavoidable. * https://www.nature.com/articles/d41586-023-02269-2 https://www.nature.com/articles/d41586-023-02269-2
Proven 3y ago
> 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!
- unethical_ban 3y ago
  What risk do you perceive from being vaccinated that makes it at least as risky as covid and long covid? You feel like shit for a day, true.
  - pfannkuchen 3y ago
    The fact that mRNA based interventions have never before been deployed and as an individual it’s sensible to be cautious about using them until there is long term safety data?
    - makeitdouble 3y ago
      We don't have long term safety data on any covid variant either...
      - pfannkuchen 3y ago
        No, but we do have an enormous amount of data on viruses in general. “The unknown” is limited to the unique attributes of a specific virus, and any common attributes across viruses in general or related-and-well-studied are low risk for producing unexpected long term effects. For mRNA interventions on the other hand, “the unknown” covers the entire mechanism.
        Timon3 3y ago
getmeinrn 3y ago
>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 3y ago
  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).
- AndrewDucker 3y ago
  Here's the BBC's write up on the subject https://www.bbc.co.uk/news/health-60393588 https://www.bbc.co.uk/news/health-60393588
300bps 3y ago
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-chronic-fatigue-syndrome-share https://www.jwatch.org/na56219/2023/06/15/long-covid-and-chr... https://www.publichealth.columbia.edu/news/long-covid-really-chronic-fatigue-syndrome-another-name https://www.publichealth.columbia.edu/news/long-covid-really... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10117846/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10117846/
- stefs 3y ago
  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/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9839201/
- whimsicalism 3y ago
  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.
  - gadders 3y ago
    Examining Association of Personality Characteristics and Neuropsychiatric Symptoms in Post-COVID Syndrome "Conclusions: Our study shows higher levels of neuroticism in patients with post-COVID syndrome. " https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9819212/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9819212/
  - ruskyhacker 3y ago
    What does it mean?
zingababba 3y ago
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.
- Workaccount2 3y ago
  I'm in the same boat. My heart rate has never gone back to where it was and my breathing never returned to being fully "satiating". Gone through the gamut of medical tests and everything is "normal".
  - el_chapitan 3y ago
    > My heart rate has never gone back to where it was and my breathing never returned to being fully "satiating". > Gone through the gamut of medical tests and everything is "normal". This, 100% this; and it's a concept that's really hard to get across to people, even doctors. I got to the point where I decided to start doing stuff again because it was the only way to get back. I'm in way better shape that previously since covid, but that "fully satiating breath" is still not coming.
- NickC25 3y ago
  Me too. Wile I still push myself in the gym nearly every day, for some reason I'm just not as energetic as I used to be. I'm 33, and was in my 20s when COVID came around. I got vaxed quickly, and have gotten boosters since. I still caught COVID twice. Not fun. Still not the same though, although hitting 30 and beyond might have something to do with it too, as that's the "line" where athletes of all levels usually start to loose a step or a second of reaction time. The constant brain fog is not cool either. It's like I'm stoned out of my mind sometimes and not able to function properly....but without the relaxation that being stoned brings.
  - stefs 3y ago
    this is slightly offtopic for this thread, but: if you're not an elite strength athlete, hitting 30 will not yet have overly negative effects. as an intermediate athlete you might still be able to improve well into your forties. even elite strength athletes used to hit their peak well into their mid- to late thirties (weightlifting) or even fourties (powerlifting, strongman). same with endurance athletes (in both cases that's not completely true anymore, the best are getting younger and they peak earlier).
nafix 3y ago
Hasn't there been lots of evidence in the past year suggesting that Covid was created in a lab? If we were to go down this path: 1. Covid created in a lab (not proven, but high enough probability to be considered a reasonable option): https://oversight.house.gov/release/covid-origins-hearing-wrap-up-facts-science-evidence-point-to-a-wuhan-lab-leak%EF%BF%BC/ https://oversight.house.gov/release/covid-origins-hearing-wr... 2. If Covid was created in a lab, this de-facto means that Covid has potential as a biological weapon. I don't see how this could be framed any other way. Even if researching novel viruses is in good faith, it doesn't eliminate the reality that they will always have inherit value as biological weapons. 3. Can someone explain to me why there isn't an extremely aggressive campaign to pin down: a. Where it came from b. All parties involved in it's funding and creating c. Passing laws and sanctions to eliminate further continuation of said research. If it was done by China, then they should publicly be held accountable and action should be taken until that is done by all countries. In this line of assuming Covid was created in a lab, it was one of the most devastating events to the human race in recent history. Many people died and many more people will likely suffer from effects of long covid. It completely warped the global economy. Is there no attempt at pinning this down and holding people accountable because it can't be proven that it was lab created 100%? There's a million lesser events every single day that seemingly get more time, money, and energy spent on holding people accountable for infinitely smaller mistakes, accidents, and wrong doings.
- deleted 3y ago
  [deleted]
- Workaccount2 3y ago
  1. Very well could have been. 2. Virologists have legitimate reasons for wanting to study more dangerous forms of viruses before they appear in the wild. 3. China.
- MajimasEyepatch 3y ago
  No, there is little evidence suggesting it was created in a lab. There is evidence that it may have "leaked" from a lab that studies coronaviruses, but that doesn't mean it was engineered. The leading lab leak theory states that it could have been a sample collected from the wild, e.g. a bat colony, that was taken to the lab, and then someone at the lab was exposed. US intelligence agencies have clearly stated that they do not believe that SARS-CoV2 was created by the Chinese government and that it should not be considered a biological weapon. While I understand why people doubt US intelligence sometimes, I can't see what incentive they would have to go easy on China in this case. I also have no idea how you intend to hold a sovereign nation, let alone a borderline superpower, accountable for something that can't even be proved.
monero-xmr 3y ago
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.
- artimaeis 3y ago
  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?
  - whimsicalism 3y ago
    Sure, but I think for the bulk of reported long covid symptoms, there is a dispute over whether the cause is more related to post-virus sequelae or perceived infection by covid. Long covid is likely a combination of both types, but there is evidence that a significant proportion is of the latter form.
- OO000oo 3y ago
  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.
- retrac 3y ago
  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.
aurizon 3y ago
We need mucosal vaccines, some are close. https://www.nature.com/articles/s41385-020-00359-2 https://www.nature.com/articles/s41385-020-00359-2
bigmattystyles 3y ago
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.
- jxramos 3y ago
  can you kindly link a sample of some of her material that intersects with this topic that you've watched. I'm curious of that data point.
  - bigmattystyles 3y ago
    I don't mean she's covered long covid as a journalist - I mean she's affected by it. https://www.youtube.com/watch?v=vydgkCCXbTA https://www.youtube.com/watch?v=vydgkCCXbTA
    - jxramos 3y ago
      right, she's a victim of it, I got that. Wow, she's got an awesome set of true friends, really heartening to see that support and love surrounding her. Amazing.
treprinum 3y ago
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.
- LudwigNagasena 3y ago
  What supplements have you been taking and what is your diet?
  - treprinum 3y ago
    I switched to carnivore 100% for a month when I started improving. I was taking mitochondrial supplements like megadosing B1/B2/B3/Niagen/NMN, CoQ10 + PQQ, L-carnitine, R ALA, pterostilbene. I took 1000-2000mg bovine lactoferrin with up to 120mg iron bisglycinate and 25-50mg benadryl for nights. I mixed my own AXA1125 (BCAA, Glutamine, NAC and Arginine + vitamin C) and took about 50g a day of that. I took endothelial stuff like nattokinase, serrapeptase, aspirin, diosmin:hesperidin, aescin, curcumin, quercetin, K2, ginkgo, pycnogenol/OPC, omega-3, kyolic, hawthorn berry. I ate 1 non-sweet chocolate a day (100% Lindt) to raise adiponectin and PQQ. I took like 5g of magnesium bisglycinate and potassium citrate a day. Daily workout was important even if it sometimes went to painful headaches which I controlled by ibuprofen and tylenol (the first two weeks were particularly horrible). Lately I added stuff like astragalus, artemisinin, dandelion root, boswellic acid, trans resveratrol, red beet, PEA + luteolin. I feel 1000x better than in February when I thought I could die at any moment.
    - 3y ago
andai 3y ago
>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.
jlkwtl34t 3y ago
[flagged]
jlkwtl34t 3y ago
[flagged]
Glench 3y ago
> 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 3y ago
  It has never been a better time for this to happen. Especially with modern medicine and the advancements of AI. While I did suffer from LC(and probably still will if it relapses), I can also see the silver linings.
dsab 3y ago
I am sceptic to long covid since I dont believe in big pharma good intentions. Years have passed since one pharma company knowingly sold infected drugs to 3rd world countries [1], but the nature of human didn't change. Big companies are run by people with black triad personality traits and who are incredibly greedy [1] https://www.theguardian.com/world/2003/may/23/aids.suzannegoldenberg https://www.theguardian.com/world/2003/may/23/aids.suzannego...
- pstuart 3y ago
  > I am sceptic to long covid since I dont believe in big pharma good intentions. That doesn't make any sense.
- last_responder 3y ago
  The idiots are leaking into HN
  - fknorangesite 3y ago
    It's not a new leak.
  - dsab 3y ago
    yes there are more and more people who believe everything they read on internet
jlkwtl34t 3y ago
[flagged]
xdennis 3y ago
There are over 50 long term effects[1] of long Covid, with the top 3 being fatigue, headache, and attention disorder. To me it sounds like long Covid is just a series of various ailments caused by various reasons but all blamed on Covid. [1]: https://en.wikipedia.org/wiki/Long_COVID#/media/File:Long-term_effects_of_COVID-19.webp https://en.wikipedia.org/wiki/Long_COVID#/media/File:Long-te...
mips_r4300i 3y ago
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.
- thenerdhead 3y ago
  This puts a spotlight on the problem and likely novel findings will come to help answer those who have suffered early on like Howard Bloom and his full recovery after over a decade being housebound. > My advice if you have this is to be proactive. Nobody will fix this for you. 100%.
thenerdhead 3y ago
Went through two bouts of long covid so far. https://jondouglas.dev/long-covid/ 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.
eggy 3y ago
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 https://youtu.be/M77TmgZ540E
Slava_Propanei 3y ago
[dead]

122 points by harryleeming 3y ago

ARandomerDude 3y ago

[flagged]

GonGonBungaBoom 3y ago
[flagged]
jimbob45 3y ago
COVID was feared to mutate into something dangerous and that's why we took it so seriously. The Spanish Flu started out similarly innocuously and then turned into something terrible. That's what we were trying to (and succeeded at being able to) avoid.
- smorrow 3y ago
  > That's what we were trying to (and succeeded at being able to) avoid. What did he mean by this?
- deleted 3y ago
  [deleted]
- FormulatedEdits 3y ago
  Sorry, but that’s not the narrative that was all over the news at all. If that’s what the powers that be were thinking they didn’t tell us so!
  - wredue 3y ago
    They most certainly did. The main point that was pushed, however, was that health infrastructure simply could not handle Covid, and that without suppressing its transmission, many more would have died.
  - last_responder 3y ago
    Guess you were watching some right wing garbage. This was always talked about.
    - FormulatedEdits 3y ago
      The BBC isn’t typically considered right-wing garbage, except perhaps to consumers of extremely left-wing garbage. I promise you that while it may have been talked about, it was never the main or even a major part of the story*. The comment I’m replying to (yours I guess from the attempted burn) implies heavily that it was the agreed-upon and media-promoted main strategy, which is an obvious falsehood, hence the downvotes that comment received. Maybe you think this site is all right-wing too? (Not untrue tbh, depends on the issue at hand.) *in my memory, which is fallible to be fair
- deleted 3y ago
  [deleted]
lucasmullens 3y ago
Who said it was the new bubonic plague? Even the most pessimistic people didn't claim it had that high of a mortality rate. No one is asking you to "comply" with anything, this is just an article about a study.

mikeyouse 3y ago

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/PIIS1473-3099(23)00299-2/fulltext 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.

cactusplant7374 3y ago
The intervention is Metformin during Covid onset?
- Auracle 3y ago
  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.
- noodlenotes 3y ago
  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/miscellaneous-drugs/metformin/ https://www.covid19treatmentguidelines.nih.gov/therapies/mis... [2] https://www.nejm.org/doi/full/10.1056/NEJMoa2201662 https://www.nejm.org/doi/full/10.1056/NEJMoa2201662
  - mikeyouse 3y ago
    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=NCT04510194&rank=1 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/ 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.

thebooktocome 3y ago

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.

spywaregorilla 3y ago
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- hef19898 3y ago
  Why not both?
  - spywaregorilla 3y ago
    Not doubting. Just curious. Competitive athlete in your 60s is impressive, even if age bracketed.
- thebooktocome 3y ago
  She was a diver/swimmer and is also a mathematician, yes. I wish I had half her energy, lol.
  - spywaregorilla 3y ago
    A diver at 60? Wow that sounds very arduous, if not just risky. I don't think I'd ever heard of people continuing to do competitive diving into their later years.
ck2 3y ago
It has ended dozens if not hundreds of elite athlete careers but also Olympians. Newspapers and specialty websites are full of these stories over the past few years but the public is either willfully ignorant or feel like denial is some kind of superpower. Has nothing to do with lack of fitness, anyone can get it. One big risk factor though to be clear is not the ONLY risk factor is literally genetics so that much is unavoidable. * https://www.nature.com/articles/d41586-023-02269-2 https://www.nature.com/articles/d41586-023-02269-2

Proven 3y ago

> 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!

unethical_ban 3y ago
What risk do you perceive from being vaccinated that makes it at least as risky as covid and long covid? You feel like shit for a day, true.
- pfannkuchen 3y ago
  The fact that mRNA based interventions have never before been deployed and as an individual it’s sensible to be cautious about using them until there is long term safety data?
  - makeitdouble 3y ago
    We don't have long term safety data on any covid variant either...
    - pfannkuchen 3y ago
      No, but we do have an enormous amount of data on viruses in general. “The unknown” is limited to the unique attributes of a specific virus, and any common attributes across viruses in general or related-and-well-studied are low risk for producing unexpected long term effects. For mRNA interventions on the other hand, “the unknown” covers the entire mechanism.
      - Timon3 3y ago

getmeinrn 3y ago

>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 3y ago
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).
AndrewDucker 3y ago
Here's the BBC's write up on the subject https://www.bbc.co.uk/news/health-60393588 https://www.bbc.co.uk/news/health-60393588

300bps 3y ago

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-chronic-fatigue-syndrome-share https://www.jwatch.org/na56219/2023/06/15/long-covid-and-chr... https://www.publichealth.columbia.edu/news/long-covid-really-chronic-fatigue-syndrome-another-name https://www.publichealth.columbia.edu/news/long-covid-really... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10117846/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10117846/

stefs 3y ago
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/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9839201/
whimsicalism 3y ago
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.
- gadders 3y ago
  Examining Association of Personality Characteristics and Neuropsychiatric Symptoms in Post-COVID Syndrome "Conclusions: Our study shows higher levels of neuroticism in patients with post-COVID syndrome. " https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9819212/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9819212/
- ruskyhacker 3y ago
  What does it mean?

zingababba 3y ago

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.

Workaccount2 3y ago
I'm in the same boat. My heart rate has never gone back to where it was and my breathing never returned to being fully "satiating". Gone through the gamut of medical tests and everything is "normal".
- el_chapitan 3y ago
  > My heart rate has never gone back to where it was and my breathing never returned to being fully "satiating". > Gone through the gamut of medical tests and everything is "normal". This, 100% this; and it's a concept that's really hard to get across to people, even doctors. I got to the point where I decided to start doing stuff again because it was the only way to get back. I'm in way better shape that previously since covid, but that "fully satiating breath" is still not coming.
NickC25 3y ago
Me too. Wile I still push myself in the gym nearly every day, for some reason I'm just not as energetic as I used to be. I'm 33, and was in my 20s when COVID came around. I got vaxed quickly, and have gotten boosters since. I still caught COVID twice. Not fun. Still not the same though, although hitting 30 and beyond might have something to do with it too, as that's the "line" where athletes of all levels usually start to loose a step or a second of reaction time. The constant brain fog is not cool either. It's like I'm stoned out of my mind sometimes and not able to function properly....but without the relaxation that being stoned brings.
- stefs 3y ago
  this is slightly offtopic for this thread, but: if you're not an elite strength athlete, hitting 30 will not yet have overly negative effects. as an intermediate athlete you might still be able to improve well into your forties. even elite strength athletes used to hit their peak well into their mid- to late thirties (weightlifting) or even fourties (powerlifting, strongman). same with endurance athletes (in both cases that's not completely true anymore, the best are getting younger and they peak earlier).

nafix 3y ago

Hasn't there been lots of evidence in the past year suggesting that Covid was created in a lab? If we were to go down this path: 1. Covid created in a lab (not proven, but high enough probability to be considered a reasonable option): https://oversight.house.gov/release/covid-origins-hearing-wrap-up-facts-science-evidence-point-to-a-wuhan-lab-leak%EF%BF%BC/ https://oversight.house.gov/release/covid-origins-hearing-wr... 2. If Covid was created in a lab, this de-facto means that Covid has potential as a biological weapon. I don't see how this could be framed any other way. Even if researching novel viruses is in good faith, it doesn't eliminate the reality that they will always have inherit value as biological weapons. 3. Can someone explain to me why there isn't an extremely aggressive campaign to pin down: a. Where it came from b. All parties involved in it's funding and creating c. Passing laws and sanctions to eliminate further continuation of said research. If it was done by China, then they should publicly be held accountable and action should be taken until that is done by all countries. In this line of assuming Covid was created in a lab, it was one of the most devastating events to the human race in recent history. Many people died and many more people will likely suffer from effects of long covid. It completely warped the global economy. Is there no attempt at pinning this down and holding people accountable because it can't be proven that it was lab created 100%? There's a million lesser events every single day that seemingly get more time, money, and energy spent on holding people accountable for infinitely smaller mistakes, accidents, and wrong doings.

deleted 3y ago
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Workaccount2 3y ago
1. Very well could have been. 2. Virologists have legitimate reasons for wanting to study more dangerous forms of viruses before they appear in the wild. 3. China.
MajimasEyepatch 3y ago
No, there is little evidence suggesting it was created in a lab. There is evidence that it may have "leaked" from a lab that studies coronaviruses, but that doesn't mean it was engineered. The leading lab leak theory states that it could have been a sample collected from the wild, e.g. a bat colony, that was taken to the lab, and then someone at the lab was exposed. US intelligence agencies have clearly stated that they do not believe that SARS-CoV2 was created by the Chinese government and that it should not be considered a biological weapon. While I understand why people doubt US intelligence sometimes, I can't see what incentive they would have to go easy on China in this case. I also have no idea how you intend to hold a sovereign nation, let alone a borderline superpower, accountable for something that can't even be proved.

monero-xmr 3y ago

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.

artimaeis 3y ago
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?
- whimsicalism 3y ago
  Sure, but I think for the bulk of reported long covid symptoms, there is a dispute over whether the cause is more related to post-virus sequelae or perceived infection by covid. Long covid is likely a combination of both types, but there is evidence that a significant proportion is of the latter form.
OO000oo 3y ago
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.
retrac 3y ago
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.

aurizon 3y ago

We need mucosal vaccines, some are close. https://www.nature.com/articles/s41385-020-00359-2 https://www.nature.com/articles/s41385-020-00359-2

bigmattystyles 3y ago

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.

jxramos 3y ago
can you kindly link a sample of some of her material that intersects with this topic that you've watched. I'm curious of that data point.
- bigmattystyles 3y ago
  I don't mean she's covered long covid as a journalist - I mean she's affected by it. https://www.youtube.com/watch?v=vydgkCCXbTA https://www.youtube.com/watch?v=vydgkCCXbTA
  - jxramos 3y ago
    right, she's a victim of it, I got that. Wow, she's got an awesome set of true friends, really heartening to see that support and love surrounding her. Amazing.

treprinum 3y ago

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.

LudwigNagasena 3y ago
What supplements have you been taking and what is your diet?
- treprinum 3y ago
  I switched to carnivore 100% for a month when I started improving. I was taking mitochondrial supplements like megadosing B1/B2/B3/Niagen/NMN, CoQ10 + PQQ, L-carnitine, R ALA, pterostilbene. I took 1000-2000mg bovine lactoferrin with up to 120mg iron bisglycinate and 25-50mg benadryl for nights. I mixed my own AXA1125 (BCAA, Glutamine, NAC and Arginine + vitamin C) and took about 50g a day of that. I took endothelial stuff like nattokinase, serrapeptase, aspirin, diosmin:hesperidin, aescin, curcumin, quercetin, K2, ginkgo, pycnogenol/OPC, omega-3, kyolic, hawthorn berry. I ate 1 non-sweet chocolate a day (100% Lindt) to raise adiponectin and PQQ. I took like 5g of magnesium bisglycinate and potassium citrate a day. Daily workout was important even if it sometimes went to painful headaches which I controlled by ibuprofen and tylenol (the first two weeks were particularly horrible). Lately I added stuff like astragalus, artemisinin, dandelion root, boswellic acid, trans resveratrol, red beet, PEA + luteolin. I feel 1000x better than in February when I thought I could die at any moment.
  - 3y ago

andai 3y ago

>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.

jlkwtl34t 3y ago

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jlkwtl34t 3y ago

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Glench 3y ago

> 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 3y ago
It has never been a better time for this to happen. Especially with modern medicine and the advancements of AI. While I did suffer from LC(and probably still will if it relapses), I can also see the silver linings.

dsab 3y ago

I am sceptic to long covid since I dont believe in big pharma good intentions. Years have passed since one pharma company knowingly sold infected drugs to 3rd world countries [1], but the nature of human didn't change. Big companies are run by people with black triad personality traits and who are incredibly greedy [1] https://www.theguardian.com/world/2003/may/23/aids.suzannegoldenberg https://www.theguardian.com/world/2003/may/23/aids.suzannego...

pstuart 3y ago
> I am sceptic to long covid since I dont believe in big pharma good intentions. That doesn't make any sense.
last_responder 3y ago
The idiots are leaking into HN
- fknorangesite 3y ago
  It's not a new leak.
- dsab 3y ago
  yes there are more and more people who believe everything they read on internet

jlkwtl34t 3y ago

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xdennis 3y ago

There are over 50 long term effects[1] of long Covid, with the top 3 being fatigue, headache, and attention disorder. To me it sounds like long Covid is just a series of various ailments caused by various reasons but all blamed on Covid. [1]: https://en.wikipedia.org/wiki/Long_COVID#/media/File:Long-term_effects_of_COVID-19.webp https://en.wikipedia.org/wiki/Long_COVID#/media/File:Long-te...

mips_r4300i 3y ago

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.

thenerdhead 3y ago
This puts a spotlight on the problem and likely novel findings will come to help answer those who have suffered early on like Howard Bloom and his full recovery after over a decade being housebound. > My advice if you have this is to be proactive. Nobody will fix this for you. 100%.

thenerdhead 3y ago

Went through two bouts of long covid so far. https://jondouglas.dev/long-covid/ 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.

eggy 3y ago

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 https://youtu.be/M77TmgZ540E

Slava_Propanei 3y ago

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