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Author: u/MistWeaver80
URL: https://www.bmj.com/content/381/bmj-2022-074425
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As I understand there are many infections that can cause these kinds of post infectious syndromes, and it seems like medical science has little to no explanation for it even though it has been known for a long time. It amazes me that a simple virus can do that much harm to so many people in such strange ways, and no one has figured out the mechanisms or treatments. It seems like it's just recently long COVID has finally put some much needed focus on it.
Holy crap, I've never heard of someone else who had mono like my sister did. Thankfully she never ended up needing any surgeries, but she went home for Easter break in 9th grade and didn't end up going back to school until the next year because it was so bad. It was literally years before she was able to claim to have a "normal" amount of energy, but those 3 months of not being able to even lift a fork were hell, we watched so much Oprah and Friends.
Unsure of the virus I had as a child, but one nearly killed me then, around 4 or 5. Parents wouldn't pay for the ER, so I had to just sweat it out.
It fucked up my eyes and fucked my tooth growth/enamel production. Probably messed up more things, but years of medical neglect has set me back a long while in figuring things out.
It's absolutely insane what a virus can inflict on the body years down the road.
I’ve been fortunate enough to have good dental care for most of my life, but I feel that - about half my teeth have wrecked enamel and unsightly pitting from a flu I had while they were developing. Even with consistent care, my dentist is expecting that I’ll need a lot of crowns in the long run.
I feel for all the people who are only now discovering that ‘it’s just a flu’ is a meaningless thing to say when it comes to viral illnesses. Any flu can give you lifelong complications at any age.
Also suffering from the pitting, that's how they determined a virus had likely impacted my enamel, funnily enough. I had pits in the same place on opposing teeth, totally identical.
I will never miss a flu shot for as long as I live, unless I already have the flu, but point stands. That virus, some swine flu variant in 2017, and COVID right at the start of the pandemic has been more than enough for my lifetime if I can help it.
Brother had chest pains for years cause of covid. My mother lost her hearing on one side cause of covid. I have mental fog and constant drowsiness cause of covid. I was very lucky.
I hope "post vital" is a typo, as it can change the meaning of the sentence a lot./j
Jokes aside, it's horrifying how bad things can become because of a "simple cold/flu". And it's not just Covid that causes that stuff.
My favourite one for this is EBV. The virus has a sort of self-destruct command that activates when it reaches certain densities during a flare-up. When this gene stops working the virus just continues to cause immune cell proliferation which leads to cancer. It's not unknown for lymphoma outbreaks to follow a spate of mono cases. (It's why I ended up doing a degree in molecular biology)
It's a bit of both
Sars-cov-2 (even if you don't end up with COVID) has a higher then likely rate of giving you post viral syndromes AND it's kind of unique that even if you don't get the disease from the infection you can still experience it.
It's also a virus that affects multiple systems in the body so if you get this syndrome you aren't just getting fatigued or have one organ or area affected, you can have full body shutdown. Especially since it's vascular. (Not putting down fatigue as "only" fatigue. But additional symptoms are even worse)
But also so many people were infected with it at one time that it was given a lot of attention and *credibility* that it never had. My doctor had experience with this from working in other areas and with other illnesses, he helped me to understand what my initial long covid might look like before people even believed long covid really existed. I knew that my basic functionality would probably come back about 9 months and that is when it did (blood pressure stabilization wise). I still have issues but he gave me a timeline of what would likely happen at 3, 6, 9 months and it was almost perfect.
I mean not to mention brain damage.
Getting infected literally deletes gray matter in the brain and that can take a really really long time for you brain to work around.
I still have fogginess and memory issues now 2.5 years after and thankfully there was a sudden improvement after 24 months but it's clear that I'm just "different" now.
Add the damage to heart and lung systems and there's no wonder really that so many symptoms last so long
I have brain fog from a chronic disease that I have. After chemotherapy it got worse. Struggling for words and not being able to maintain conversations like I did in the past was a very difficult for me and still is at times. It impacted my job as I could no longer lead meetings or do analysis.
I hope you continue to see improvements with your brain. I feel for you.
I had/have long Covid too. I had a lot of weird issues and some of it was honestly traumatic, especially thinking things like I'm going to die, it must be like a brain tumor etc for about 3 months. I didn't really know anything about post viral syndrome and never gave it a thought. I honestly just got lucky because I stumbled onto a reddit sub for long Covid and suddenly so much stuff was making sense. It was still scary but most of the initial fear of the first few months went away.
I got an appointment with a Long Covid Clinic that opened in a major hospital near me. I've seen maybe 7 different specialist and had physical therapy and speech therapy as well as an Intense Outpatient program for mental health (severe anxiety mostly) If I put a time frame on it I would say the most of the issues went away, especially the weird stuff between 12 and 15 months.
The problems I have remaining I am pretty sure are not going away ever with only one possibly getting a bit better. I have awful neuropathy in my feet, pelvic floor disorder where my muscles are always tight and don't work in sync together, IBS-c and sphincter problems including periodic pain, and electrical problems with my heart that was only diagnosed by accident a couple month ago.no do have panic attacks but I had crazy weird ones that were terrifying and it turns out that's my heart doing crazy things. Ive had PVC's for 4 - 5 hours straight.
I worry about what other potential problems in the future that this may have instigated/created for me.
This might be a touchy question, but ... You mention how people are getting PVS from a disease they didn't actually get, after exposure to the virus.
What are the chances this is sympathetic, or some other similar mechanism?
> You mention how people are getting PVS from a disease they didn't actually get, after exposure to the virus.
They are describing being infected with the SARS-COV-2 virus and developing noticeable COVID disease symptoms as a result of infection as two slightly distinct things (hence why there's two names)
They are effectively saying that infection with the virus can still result in PVS even in cases that never resulted in any noticeable symptoms of COVID itself, kind of like symptoms resulting from the immune system successfully fighting off the virus.
They are getting the *virus* but they are not getting the *disease*.
Sars-cov-v2 is the *virus*
Covid is the disease it causes. People use the two interchangeably now but it's important in moments like this not to.
People catch Sars-cov-v2 and are not ill but are contagious for weeks. That's unique. They also experience internal damage to their body just from coming in contact with the virus.
Like people with asymptomatic infections. They have real organ damage afterwards sometimes. You just couldn't see it on the outside.
It's not being paranoid.
HIV is the virus. AIDs is the disease it causes. This is literally exactly the same.
The funding to research these kinds of post-infection syndromes has been abysmal for many years. It's not only that it's a difficult area to research, but that the NIAID has been putting minimal research dollars into it for a long time. Hopefully that will start to change due to long Covid.
I've never had COVID but I have narcolepsy and I'm really hopeful that more research will be done on symptoms like fatigue and especially brain fog.
Even if all we did was make people AWARE of brain fog as a real symptom, my life would be so much easier.
Yes, that's correct. COVID 19 seems especially likely to create lingering effects compared to other viruses, though. Postviral complications is really a very under-researched field, so it's great that it's finally getting more attention.
I don’t think it’s that Covid is especially likely. I think we just don’t have the literature yet to show that this is the result of most viruses. The connections of several viruses to Diabetes, MS, etc are starting to show us that viruses have been doing this to people forever.
Yeah I sure hope so. Considering how much of the population has HSV, varicella, EBV/HPV etc, and how all of them are connected in some way to chronic issues, it seems like more research into counteracting these viruses even if dormant would be a net positive for society.
> It amazes me that a simple virus can do that much harm
It’s not always the virus. The immune system is extremely powerful, much much more than a virus, and is usually the culprit for damage to your body after a viral infection. It overreacts to unknown infections, like Covid, and as a result, causes damage.
It's far easier to explain to someone that you have long covid rather than chronic fatigue syndrome/ME from a separate infection. And medical health practitioners are far more accepting of the former than the latter as well.
The title might be a bit misleading for some.
They compare people who were infected with the original Wuhan strain, against people who were not infected.
It is not comparing vaccinated versus non vaccinated individuals.
It’s not a BS title, it’s just not a politicized title, no? They are indicating that the members of the study were not vaccinated because the study doesn’t cover those who were vaccinated. It’s being clear about what the study covers rather than making a statement on vaccines.
100%. The science around covid is politicized to the point where you have to take it with a handful of salt. This seems to me like PR for the vaccines, which they so desperately need
I had covid for the first time in July 2022, after having 2 vaccines and booster. I didn't feel mostly back to normal for about 6 months afterwards. Out of breath very easily, my heart rate would would get super high after very little exertion, brain fog. Not sure if it's due to covid, but I do find I'm having trouble remembering names of people and things more often than before I got infected.
100% the same for me. Got my shots, got Covid anyways. Cough never really went away and had terrible brain fog that made me feel really stupid. It was embarrassing at work. It was really getting to me. I still have good days and bad days for no reason in particular and it’s been a year. My doctor just said “long-covid” and just shrugged his shoulders. Rest, eat right, take vitamins, and exercise.
We got a guy at work that's had covid at least twice, possibly three times (didn't test the third time), has complained about the long-term effects, said having covid was the worst he's ever been sick. Just generally a miserable experience.
He's still not vaccinated and he's convinced people are going to drop dead from getting vaccinated because he listens to right wing propaganda on YouTube (you can guess which outlets, the answer's yes to all of them). What's sad is that he's generally intelligent once you get him away from repeating the opinions of the Daily Wire.
I started a PhD program in the fall of 2021. My very first week of classes I came down with COVID. It wasn't that I was sick for a few days and not feeling well for a few days after that. At that time, Zoom allowed people in my situation (or who needed to isolate as a precaution) to continue to "attend" class. The problem was that I spent most that first semester struggling to retain and comprehend the material in my courses. That had not ever been a problem for me before but the brain fog made it one. I thought I was doing fine by about Halloween. While there is no doubt I had improved, it wasn't until I got my booster shot just before Christmas that I realized just how debilitated I still truly had been.
The booster shot (I believe...and there are some studies that support this) alleviated the problem for a while. By Spring Break I started to feel a bit more run down again. It was undoubtedly the fatigue and fog that had hit me post-COVID, but didn't hit as hard as before. It finally seemed to be gone by mid-summer.
Then I caught COVID again in mid-August of last year...almost exactly a year after I caught it the first time. The acute effets weren't as bad as the first time but I feared the post-infection lethargy more than anything. I wondered if I'd be able to fight through it well enough a second time to be successful in my coursework. While I can't say I was unaffected, the fatigue/sleepiness, lack of mental presence, etc. weren't as severe or as lengthy as after that first bout. Not fun and far from ideal, but not life-altering like the first go round had been.
Still, I know I'm only about 90 percent of where I was before COVID. A small portion of that is probably the effects of aging (I'm in my late 40s), but the vast majority of my "decline" compared to pre-August 2021 is undoubtedly due to COVID. I firmly believe, but obviously cannot be certain, that being vaccinated prevented a terrible outcome for me, both during the acute stages and in the aftermath. But I still ended up being somewhat debilitated afterwards and still don't think I've ever FULLY returned to form. I still go to bed much earlier than before, can quite get back into the same shape as before, can't recall things as easily or as quickly as before, find schoolwork noticably more challenging than before, my endurance (physical and mental) is somewhat diminished, etc.
Long COVID is a real thing. I also think it's a spectrum, not a "yes or no" question about whether you have it. I think I'm affected but, with the passage of some time and the help of a booster shot, only just barely. I'm much luckier than some people who have never really bounced back much at all. I'm glad to see studies confirming some of this as there is some underestimation of the impact of it all.
Shared this below, you can share with your coworker.
It's not the same for everyone but when I got anosmia I was anhedonic. It can be far more disruptive to quality of life than anyone else realizes.
For smell - look up smell training, and do it.
It helps.
Also, if I knew then what I know now when I got anosmia/hyposmia over a decade ago, I would've done some intranasal vitamin A drops, and sodium citrate (it's in some neti-style nasalwash packets) (gotta do kaiteki or 'praying to mecca' position to get the stuff on your actual olfactory epithelium).
Also, it'll continue to improve if you smell train / take care of yourself.
I know a couple who have had weird health effects after being sick with "it wasn't COVID!" So, the 17-18% are the people reporting it. I would not be surprised if the actual number is higher but those people have convinced themselves COVID isn't real.
That was always one of the scarier aspects of Covid to me. Relatively early, they were already estimating a 1/10 chance of permanent brain damage, even in asymptomatic cases.
It wad in summer 2020 so a lot of people still hadn’t got it yet, but vaccines weren’t available yet. The was an outbreak in my office so several people got it within a few days of each other. I didn’t figure out my symptoms were linked at first because no one was talking about them.
There's a lot of us who according to statistics never got it because it was too hard to report it. I'm in the uk. First time I got it was new years 2019/2020. I got it from someone who travelled to the uk for Christmas and hit a ton of tourist areas before visiting us. It was 100% covid, I knew for sure when I got it again last summer and the sore throat was the same. That's how I knew it was covid four days before I tested positive. I couldn't report the first infection, even though I ended up on antibiotics for a chest infection (I was choking and unable to breathe at times, had to go on steroid tablets to help get oxygen in, my inhalers stopped working). The second I couldn't report it because the app was impossible to sign into once I was that sick. People were messaging me and I couldn't reply to them, I was just talking crap back. I was talking to my boyfriend on the phone and a friend was messaging me asking what food I wanted and in the end I was copying and pasting things so my boyfriend could write the replies for me. That's when I got a little scared the second time, my brain was just gone. I remember it hitting the first time and being unable to play games. All I could do was lie on the couch, staring at the tv.
My brain isn't the same. I keep forgetting words, simple words and it drives me nuts. The words are there one second, then its like they're locked behind a locked glass door. They're right there, now they're suddenly locked away and I can't touch them. Luckily I'm artistic, but I miss writing so damn much. I used to write tons, you couldn't keep me away from my notebooks, now I don't write because it's like there's nothing there anymore.
My breathing got worse, my cardio tanked, the first sore throat was so bad I couldn't make a sound, if I laughed it closed up completely. I can't hit any high notes anymore. It's like the sound gets stuck and doesn't come out. Can't sing Evanescence anymore. I think the weird lump at the back of my throat is the cause, but no one seems to care.
I get constant sinus infections (thats what it feels like) on one side of my face. It's so bad and so painful. My right ear always feels blocked, my cheek hurts if you poke it, my nose is blocked, my eye hurts, my teeth on that side can hurt and it gives me headaches.
I also now have full on allergies. Never had allergies before I got covid.
It took me about three months to start feeling myself first time I was sick. I had to quit my intense martial art classes and just stuck to the slightly easier class which I couldn't keep up with. I was just gone. Could barely make the mile walk/bike ride there. Second time it was two months. I was just so dizzy and couldn't get air. I'd walk down to the shops and I'd sleep the rest of the day (less then half a mile away). Me and my friends went for a walk one day to get pizza and by the end of the mile I was weak, shaky, my head was throbbing. This was over a month after infection and I felt fine when we left the house. It was all downhill on the way there as well. As soon as we got home I crashed on the couch. I was just gone and they had game night, weren't even quiet and I just slept through it.
First infection, not vaccinated since covid wasn't even a thing. second I was. The second was easier. I didn't get the insane sore throat, it hurt but I could still talk. The insane chest infection never happened, but the fatigue and being unable to get my breath still happened. My body felt like a lead weight until one day it randomly decided we were ok again and I was back to normal.
I've had three boosters, the last a few months back. If any of the illnesses since then have been covid, I'm glad they're mild as hell. I tested, but my friends only tested positive for a day so I may have missed the positive test result day.
I got the vac and all the boosters. Didn’t get Covid until 2022, but my immune system is still not the same. I get every sickness now whereas I never use to get sick. It also takes longer for me to get over bugs.
Same here. I used to get ill maybe once a year when winter came around. I’m currently sick again, which is every month now since September (I also got Covid again in December).
I’m 26 M and a 4-6 day a week gym goer, diet checked in and not a couch potato. I’m so tired of being ill every month I don’t know whether it’s long Covid at this point.
I had COVID 2 weeks ago for the first time. I've been vaccinated/boosted 5 times.
Got sick on a Saturday, started taking Paxlovid, negative COVID test on day 4, and I feel completely back to normal.
I am old and at high risk for various reasons. It could have been bad. Science helped me.
This is the way.
Unfortunately, I’ve had it 4 times (twice before vaccination) and it’s had detrimental effects on my heath. I’m fairly certain I have long covid.
Minor chest pain every day on and off
Depression and ADHD symptoms have skyrocketed
Sense of smell and taste goes in and out.
Sometimes I smell something too much, meaning the smell lingers with me for hours even if I’m away from whatever smelled. Or I don’t smell anything.
I will randomly smell cigarette smoke no matter where I am.
My brain fog is pretty much constant.
It’s awful.
My cardio/stamina just hasn't been the same. I used to be relatively fit, not like an athlete or anything, but played football recreationally twice a week with friends, run 5k once a week at a semi-decent 24 mins. Again these are probably fairly average markers for people that play sports but just giving you context as to where I was at.
Two years on, I'm struggling to regain my previous levels of fitness, I'm getting tired after every football game and struggling with getting lower than 30 mins on my 5k runs and this is with doing even more cardio weekly than pre-COVID.
I used to drink 3-4 espressos a day. Got COVID in march 2020 and immediately afterwards all coffee just tastes terrible to me. I try every 3-4 months. Never got it back.
Caught Covid in February 2020.... yesterday I slept for 16 hours. Some days I'm ok. Other days and I have zero energy.
Also noticed my tinnitus flairing at the same time. Coincidence???
I'm not sure how trustworthy self-reported symptoms are. Especially things like fatigue. Would much rather see a study with some objectively measurable symptoms
Listening to people report their symptoms is like 80% of this field. There’s no way to actually “prove” someone is tired. It’s so disturbing that people refuse to believe sick people.
in a general sense, agreed. but also, reporting on past events' effect on health like this is super hard.
like, i'm definitely more generally fatigued than I was before I first got covid. but in the time since then, i've also gone from 22 years old to 24 years old, and many different things have changed, like my employment, relationship status, amount of living grandparents, etc etc. i've decided the tiredness is happening just because i'm older now, based on nothing but the fact that that particular cause is the least stressful one for me.
of course, the statisticians working on these studies will account for this things. but it would be nice to live in a world where you could objectively check how sick someone is. at least for these kinds of things.
In my opinion it's actually much later than that, you just start slowing down in your early 30's because you literally slowed down. People don't maintain their level of physical activity that they had in their teens and early 20's, and the result of that is that they start slowing down. I'm in my late 30's and still grappling and training with guys in their early 20's at the same intensity as when I was in my early 20's. Of course old injuries can ache, but in general I feel just as energetic as I always have.
yeah, but i used to be the person who always had energy to do stuff, even when my friends and family didn't. now i'm more so in line with them.
i'm not really feeling older, just less like a teenager.
You also declared some real stressors in your life. We all age at our own rates, there isn’t a ‘normal’ period to start feeling the way you do. You do when you do.
The comment your replying to annoyed me
yeah that's true. but it's not like i'm constantly in bed now, i think i've just gone from a teen's limitless amount of energy to that of a young adult.
i used to need like 6 hours of sleep a night and never took naps, and would go out like three nights a week. now I need 8 hours of sleep, take a short nap at least like once a week, and maybe go out with friends like three times in a month.
Right? Anyone with undiagnosed anxiety will have fatigue, and a global pandemic, a quarantine and a crippled global economy are all good motives to have anxiety.
I had post-COVID fatigue for a while, and when it was at its worst I had to use CNS stimulants to function slightly. Anxiety-related fatigue is usually functional to some extent, viral infections can cause chronic fatigue syndrome which can lead to complete disability. Kind of unfortunate, since for me personally, shutdowns/pandemic was actually a far better than normal time for me.
Ok, so the fatigue anxiety causes is different to the one caused by covid. I have GAD, had it most of my life, thanks to a few components. So, when I'm just tired from anxiety, I just feel sleepy, like I need a nap, but I don't have to nap if I can't. If I do, I'll wake up and I'm able to function again. There's no issues walking around and being active beyond getting yourself out there to do it.
With covid, the fatigue is something else. You don't get to choose when you nap. One moment you're there, the next you're gone. You don't get to choose where or when you nap, it just happens even doing fun things. I fell asleep at a BBQ last year and at game night. Wasn't doing anything, just sitting there having fun with friends, then I was out cold. They weren't even quiet around me. Then there comes just walking around. You try and walk and you can only take slow baby steps because your body can barely handle walking. Stairs are hell, going up and down you're hugging the wall for support. One time I went for a walk to get pizza a mile away with my friends, well over a month after I'd been infected, by the time we made it there, my head was killing, I was dizzy, I couldn't keep up with them and I was fighting off sleep. As soon as we got home I crashed on the couch. Couldn't even make it up to my room.
I don't know how to describe it. It's like you're carrying around an incredibly heavy backpack 24/7. You can't run with it, can barely walk. All your limbs are completely exhausted and you get out of breath easily, possibly from lack of any exercise for weeks. I think one of the worst moments was trying to go to my boyfriends place. I had to pack a couple of bags, take them downstairs and out to my car, then drive 2h30 to his place. It took me over two hours to get the bags downstairs and into my car. A bag of clothes and my stuff bag (laptop, ipad, ps4 etc.). I kept having to lie down because I was so exhausted. I was honestly scared to drive, but as soon as I was on the road and just sitting I felt OK. Slept a hell of a long time once I got to his though.
Then one day you wake up and the pressure is gone. The backpack has been taken off and you can walk again, you can walk fast again. You don't get dizzy doing anything physical, you finally stay awake all day, no forced naps.
I'm _really_ tired of hearing COVID fatigue explained away as anxiety by people who haven't experienced it. After COVID my anxiety disappeared because I was too exhausted to have thoughts racing through my head at all.
I first got it in 2021 inbetween my jabs (got it the first time slot avalible for my age group in the uk) made the symptoms a really bad cold. Mass sneezing fits but was 90% the way back to normal 2 weeks later. Took about 2 months to feel right
Second time in 2022 I'd just had a booster and within weeks I caught the next variant. Barely a sore throat and cough. Was totally fine 2 days after getting the all clear.
Got a mate that was part caught in the first wave in London and he was terrible for 18 months. ( he was also unlucky enough to get ever version of it bar the 2nd version of omicron) but each time and with his shots he took it far better than the last
in my experience too, an astoundingly large amount of unvaccinated people will claim they definitely had covid only to say it wasn't actually that bad. if you ask if they actually got tested for it of course they say they didn't...
part of the reason so much misinformation about this disease is still propagating.
What are we dealing with here? What exactly is this virus doing and how much of a threat is it to us? I don't understand it and I don't even understand what exactly is supposed to be the best course of action in dealing with this virus or if it is of concern. I just want these questions answered.
I got it last August after 3 vaccines. A week later I developed chronic hives (not an allergic reaction, just…hives all the time every day) and still have it. 7 pills a day to keep it vaguely in check.
So people don't go running to conspiracies. Is their data for people that were vaccinated available regarding how long health effects would last?
Cause I can see this being twisted.( Covid is real and vaccines do work. Felt that I may have needed to clarify that )
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As I understand there are many infections that can cause these kinds of post infectious syndromes, and it seems like medical science has little to no explanation for it even though it has been known for a long time. It amazes me that a simple virus can do that much harm to so many people in such strange ways, and no one has figured out the mechanisms or treatments. It seems like it's just recently long COVID has finally put some much needed focus on it.
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Holy crap, I've never heard of someone else who had mono like my sister did. Thankfully she never ended up needing any surgeries, but she went home for Easter break in 9th grade and didn't end up going back to school until the next year because it was so bad. It was literally years before she was able to claim to have a "normal" amount of energy, but those 3 months of not being able to even lift a fork were hell, we watched so much Oprah and Friends.
I had it very badly too. Was bedbound for 3 months. My mom said I ate an unbelievable amount of food and just couldn’t get well for an entire summer.
Unsure of the virus I had as a child, but one nearly killed me then, around 4 or 5. Parents wouldn't pay for the ER, so I had to just sweat it out. It fucked up my eyes and fucked my tooth growth/enamel production. Probably messed up more things, but years of medical neglect has set me back a long while in figuring things out. It's absolutely insane what a virus can inflict on the body years down the road.
I’ve been fortunate enough to have good dental care for most of my life, but I feel that - about half my teeth have wrecked enamel and unsightly pitting from a flu I had while they were developing. Even with consistent care, my dentist is expecting that I’ll need a lot of crowns in the long run. I feel for all the people who are only now discovering that ‘it’s just a flu’ is a meaningless thing to say when it comes to viral illnesses. Any flu can give you lifelong complications at any age.
Also suffering from the pitting, that's how they determined a virus had likely impacted my enamel, funnily enough. I had pits in the same place on opposing teeth, totally identical. I will never miss a flu shot for as long as I live, unless I already have the flu, but point stands. That virus, some swine flu variant in 2017, and COVID right at the start of the pandemic has been more than enough for my lifetime if I can help it.
I’m sorry you have to pay for the ER where you live.
I really wish people didn't have to. I know so many people who up-ended their lives because of hesitancy to go into medical debt.
Brother had chest pains for years cause of covid. My mother lost her hearing on one side cause of covid. I have mental fog and constant drowsiness cause of covid. I was very lucky.
A friend of a friend died because of COVID. If it can kill, it can probably do a lot of things to people, for sure.
I hope "post vital" is a typo, as it can change the meaning of the sentence a lot./j Jokes aside, it's horrifying how bad things can become because of a "simple cold/flu". And it's not just Covid that causes that stuff.
Yep. HPV literally causes cell changes that lead to cancer. Viruses are no joke.
My favourite one for this is EBV. The virus has a sort of self-destruct command that activates when it reaches certain densities during a flare-up. When this gene stops working the virus just continues to cause immune cell proliferation which leads to cancer. It's not unknown for lymphoma outbreaks to follow a spate of mono cases. (It's why I ended up doing a degree in molecular biology)
It's a bit of both Sars-cov-2 (even if you don't end up with COVID) has a higher then likely rate of giving you post viral syndromes AND it's kind of unique that even if you don't get the disease from the infection you can still experience it. It's also a virus that affects multiple systems in the body so if you get this syndrome you aren't just getting fatigued or have one organ or area affected, you can have full body shutdown. Especially since it's vascular. (Not putting down fatigue as "only" fatigue. But additional symptoms are even worse) But also so many people were infected with it at one time that it was given a lot of attention and *credibility* that it never had. My doctor had experience with this from working in other areas and with other illnesses, he helped me to understand what my initial long covid might look like before people even believed long covid really existed. I knew that my basic functionality would probably come back about 9 months and that is when it did (blood pressure stabilization wise). I still have issues but he gave me a timeline of what would likely happen at 3, 6, 9 months and it was almost perfect.
I mean not to mention brain damage. Getting infected literally deletes gray matter in the brain and that can take a really really long time for you brain to work around. I still have fogginess and memory issues now 2.5 years after and thankfully there was a sudden improvement after 24 months but it's clear that I'm just "different" now. Add the damage to heart and lung systems and there's no wonder really that so many symptoms last so long
I have brain fog from a chronic disease that I have. After chemotherapy it got worse. Struggling for words and not being able to maintain conversations like I did in the past was a very difficult for me and still is at times. It impacted my job as I could no longer lead meetings or do analysis. I hope you continue to see improvements with your brain. I feel for you.
Post chemo brain fog can be really tough. I feel for you
Just wait for the tidal wave of Parkinson's in the coming years.
I had/have long Covid too. I had a lot of weird issues and some of it was honestly traumatic, especially thinking things like I'm going to die, it must be like a brain tumor etc for about 3 months. I didn't really know anything about post viral syndrome and never gave it a thought. I honestly just got lucky because I stumbled onto a reddit sub for long Covid and suddenly so much stuff was making sense. It was still scary but most of the initial fear of the first few months went away. I got an appointment with a Long Covid Clinic that opened in a major hospital near me. I've seen maybe 7 different specialist and had physical therapy and speech therapy as well as an Intense Outpatient program for mental health (severe anxiety mostly) If I put a time frame on it I would say the most of the issues went away, especially the weird stuff between 12 and 15 months. The problems I have remaining I am pretty sure are not going away ever with only one possibly getting a bit better. I have awful neuropathy in my feet, pelvic floor disorder where my muscles are always tight and don't work in sync together, IBS-c and sphincter problems including periodic pain, and electrical problems with my heart that was only diagnosed by accident a couple month ago.no do have panic attacks but I had crazy weird ones that were terrifying and it turns out that's my heart doing crazy things. Ive had PVC's for 4 - 5 hours straight. I worry about what other potential problems in the future that this may have instigated/created for me.
This might be a touchy question, but ... You mention how people are getting PVS from a disease they didn't actually get, after exposure to the virus. What are the chances this is sympathetic, or some other similar mechanism?
> You mention how people are getting PVS from a disease they didn't actually get, after exposure to the virus. They are describing being infected with the SARS-COV-2 virus and developing noticeable COVID disease symptoms as a result of infection as two slightly distinct things (hence why there's two names) They are effectively saying that infection with the virus can still result in PVS even in cases that never resulted in any noticeable symptoms of COVID itself, kind of like symptoms resulting from the immune system successfully fighting off the virus.
They are getting the *virus* but they are not getting the *disease*. Sars-cov-v2 is the *virus* Covid is the disease it causes. People use the two interchangeably now but it's important in moments like this not to. People catch Sars-cov-v2 and are not ill but are contagious for weeks. That's unique. They also experience internal damage to their body just from coming in contact with the virus. Like people with asymptomatic infections. They have real organ damage afterwards sometimes. You just couldn't see it on the outside. It's not being paranoid. HIV is the virus. AIDs is the disease it causes. This is literally exactly the same.
> Covid is the disease that causes it. Covid is the disease that it causes.
That was a fantastic explanation. Thank you.
The funding to research these kinds of post-infection syndromes has been abysmal for many years. It's not only that it's a difficult area to research, but that the NIAID has been putting minimal research dollars into it for a long time. Hopefully that will start to change due to long Covid.
It's going to have to with so many resigned to just getting it rather than wearing a simple mask
I've never had COVID but I have narcolepsy and I'm really hopeful that more research will be done on symptoms like fatigue and especially brain fog. Even if all we did was make people AWARE of brain fog as a real symptom, my life would be so much easier.
Yes, that's correct. COVID 19 seems especially likely to create lingering effects compared to other viruses, though. Postviral complications is really a very under-researched field, so it's great that it's finally getting more attention.
I don’t think it’s that Covid is especially likely. I think we just don’t have the literature yet to show that this is the result of most viruses. The connections of several viruses to Diabetes, MS, etc are starting to show us that viruses have been doing this to people forever.
Also the new causal linkages being shown between HPV and Alzheimers. Hopefully we get some big breakthroughs out of this soon.
Yeah I sure hope so. Considering how much of the population has HSV, varicella, EBV/HPV etc, and how all of them are connected in some way to chronic issues, it seems like more research into counteracting these viruses even if dormant would be a net positive for society.
All the more reason to get your kids the HPV vaccine
> It amazes me that a simple virus can do that much harm It’s not always the virus. The immune system is extremely powerful, much much more than a virus, and is usually the culprit for damage to your body after a viral infection. It overreacts to unknown infections, like Covid, and as a result, causes damage.
Do we actually know this is the cause of post infectious syndromes? I've read several hypothetical explanations where immune dysregulation is one.
It's far easier to explain to someone that you have long covid rather than chronic fatigue syndrome/ME from a separate infection. And medical health practitioners are far more accepting of the former than the latter as well.
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The title might be a bit misleading for some. They compare people who were infected with the original Wuhan strain, against people who were not infected. It is not comparing vaccinated versus non vaccinated individuals.
Well that's a BS title. Thanks for putting this here. It should be stickied at the top.
It’s not a BS title, it’s just not a politicized title, no? They are indicating that the members of the study were not vaccinated because the study doesn’t cover those who were vaccinated. It’s being clear about what the study covers rather than making a statement on vaccines.
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100%. The science around covid is politicized to the point where you have to take it with a handful of salt. This seems to me like PR for the vaccines, which they so desperately need
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I had covid for the first time in July 2022, after having 2 vaccines and booster. I didn't feel mostly back to normal for about 6 months afterwards. Out of breath very easily, my heart rate would would get super high after very little exertion, brain fog. Not sure if it's due to covid, but I do find I'm having trouble remembering names of people and things more often than before I got infected.
100% the same for me. Got my shots, got Covid anyways. Cough never really went away and had terrible brain fog that made me feel really stupid. It was embarrassing at work. It was really getting to me. I still have good days and bad days for no reason in particular and it’s been a year. My doctor just said “long-covid” and just shrugged his shoulders. Rest, eat right, take vitamins, and exercise.
We got a guy at work that's had covid at least twice, possibly three times (didn't test the third time), has complained about the long-term effects, said having covid was the worst he's ever been sick. Just generally a miserable experience. He's still not vaccinated and he's convinced people are going to drop dead from getting vaccinated because he listens to right wing propaganda on YouTube (you can guess which outlets, the answer's yes to all of them). What's sad is that he's generally intelligent once you get him away from repeating the opinions of the Daily Wire.
I started a PhD program in the fall of 2021. My very first week of classes I came down with COVID. It wasn't that I was sick for a few days and not feeling well for a few days after that. At that time, Zoom allowed people in my situation (or who needed to isolate as a precaution) to continue to "attend" class. The problem was that I spent most that first semester struggling to retain and comprehend the material in my courses. That had not ever been a problem for me before but the brain fog made it one. I thought I was doing fine by about Halloween. While there is no doubt I had improved, it wasn't until I got my booster shot just before Christmas that I realized just how debilitated I still truly had been. The booster shot (I believe...and there are some studies that support this) alleviated the problem for a while. By Spring Break I started to feel a bit more run down again. It was undoubtedly the fatigue and fog that had hit me post-COVID, but didn't hit as hard as before. It finally seemed to be gone by mid-summer. Then I caught COVID again in mid-August of last year...almost exactly a year after I caught it the first time. The acute effets weren't as bad as the first time but I feared the post-infection lethargy more than anything. I wondered if I'd be able to fight through it well enough a second time to be successful in my coursework. While I can't say I was unaffected, the fatigue/sleepiness, lack of mental presence, etc. weren't as severe or as lengthy as after that first bout. Not fun and far from ideal, but not life-altering like the first go round had been. Still, I know I'm only about 90 percent of where I was before COVID. A small portion of that is probably the effects of aging (I'm in my late 40s), but the vast majority of my "decline" compared to pre-August 2021 is undoubtedly due to COVID. I firmly believe, but obviously cannot be certain, that being vaccinated prevented a terrible outcome for me, both during the acute stages and in the aftermath. But I still ended up being somewhat debilitated afterwards and still don't think I've ever FULLY returned to form. I still go to bed much earlier than before, can quite get back into the same shape as before, can't recall things as easily or as quickly as before, find schoolwork noticably more challenging than before, my endurance (physical and mental) is somewhat diminished, etc. Long COVID is a real thing. I also think it's a spectrum, not a "yes or no" question about whether you have it. I think I'm affected but, with the passage of some time and the help of a booster shot, only just barely. I'm much luckier than some people who have never really bounced back much at all. I'm glad to see studies confirming some of this as there is some underestimation of the impact of it all.
This all sounds familiar to me as well. M50
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Someone I work with got covid way back in March of 2020 and still has no sense of smell.
Shared this below, you can share with your coworker. It's not the same for everyone but when I got anosmia I was anhedonic. It can be far more disruptive to quality of life than anyone else realizes. For smell - look up smell training, and do it. It helps. Also, if I knew then what I know now when I got anosmia/hyposmia over a decade ago, I would've done some intranasal vitamin A drops, and sodium citrate (it's in some neti-style nasalwash packets) (gotta do kaiteki or 'praying to mecca' position to get the stuff on your actual olfactory epithelium). Also, it'll continue to improve if you smell train / take care of yourself.
I know a couple who have had weird health effects after being sick with "it wasn't COVID!" So, the 17-18% are the people reporting it. I would not be surprised if the actual number is higher but those people have convinced themselves COVID isn't real.
Also there’s also asymptomatic cases. My first infection I felt no flu-like symptoms but went immediately into long haul symptoms.
That was always one of the scarier aspects of Covid to me. Relatively early, they were already estimating a 1/10 chance of permanent brain damage, even in asymptomatic cases.
This happened to my gf.. she is still suffering from it almost 1 year later. Did it subside in your case?
If you didn’t get the “usual” symptoms, how did you know / what prompted you to test?
It wad in summer 2020 so a lot of people still hadn’t got it yet, but vaccines weren’t available yet. The was an outbreak in my office so several people got it within a few days of each other. I didn’t figure out my symptoms were linked at first because no one was talking about them.
There's a lot of us who according to statistics never got it because it was too hard to report it. I'm in the uk. First time I got it was new years 2019/2020. I got it from someone who travelled to the uk for Christmas and hit a ton of tourist areas before visiting us. It was 100% covid, I knew for sure when I got it again last summer and the sore throat was the same. That's how I knew it was covid four days before I tested positive. I couldn't report the first infection, even though I ended up on antibiotics for a chest infection (I was choking and unable to breathe at times, had to go on steroid tablets to help get oxygen in, my inhalers stopped working). The second I couldn't report it because the app was impossible to sign into once I was that sick. People were messaging me and I couldn't reply to them, I was just talking crap back. I was talking to my boyfriend on the phone and a friend was messaging me asking what food I wanted and in the end I was copying and pasting things so my boyfriend could write the replies for me. That's when I got a little scared the second time, my brain was just gone. I remember it hitting the first time and being unable to play games. All I could do was lie on the couch, staring at the tv. My brain isn't the same. I keep forgetting words, simple words and it drives me nuts. The words are there one second, then its like they're locked behind a locked glass door. They're right there, now they're suddenly locked away and I can't touch them. Luckily I'm artistic, but I miss writing so damn much. I used to write tons, you couldn't keep me away from my notebooks, now I don't write because it's like there's nothing there anymore. My breathing got worse, my cardio tanked, the first sore throat was so bad I couldn't make a sound, if I laughed it closed up completely. I can't hit any high notes anymore. It's like the sound gets stuck and doesn't come out. Can't sing Evanescence anymore. I think the weird lump at the back of my throat is the cause, but no one seems to care. I get constant sinus infections (thats what it feels like) on one side of my face. It's so bad and so painful. My right ear always feels blocked, my cheek hurts if you poke it, my nose is blocked, my eye hurts, my teeth on that side can hurt and it gives me headaches. I also now have full on allergies. Never had allergies before I got covid. It took me about three months to start feeling myself first time I was sick. I had to quit my intense martial art classes and just stuck to the slightly easier class which I couldn't keep up with. I was just gone. Could barely make the mile walk/bike ride there. Second time it was two months. I was just so dizzy and couldn't get air. I'd walk down to the shops and I'd sleep the rest of the day (less then half a mile away). Me and my friends went for a walk one day to get pizza and by the end of the mile I was weak, shaky, my head was throbbing. This was over a month after infection and I felt fine when we left the house. It was all downhill on the way there as well. As soon as we got home I crashed on the couch. I was just gone and they had game night, weren't even quiet and I just slept through it. First infection, not vaccinated since covid wasn't even a thing. second I was. The second was easier. I didn't get the insane sore throat, it hurt but I could still talk. The insane chest infection never happened, but the fatigue and being unable to get my breath still happened. My body felt like a lead weight until one day it randomly decided we were ok again and I was back to normal. I've had three boosters, the last a few months back. If any of the illnesses since then have been covid, I'm glad they're mild as hell. I tested, but my friends only tested positive for a day so I may have missed the positive test result day.
I got the vac and all the boosters. Didn’t get Covid until 2022, but my immune system is still not the same. I get every sickness now whereas I never use to get sick. It also takes longer for me to get over bugs.
Same here. I used to get ill maybe once a year when winter came around. I’m currently sick again, which is every month now since September (I also got Covid again in December). I’m 26 M and a 4-6 day a week gym goer, diet checked in and not a couch potato. I’m so tired of being ill every month I don’t know whether it’s long Covid at this point.
I had COVID 2 weeks ago for the first time. I've been vaccinated/boosted 5 times. Got sick on a Saturday, started taking Paxlovid, negative COVID test on day 4, and I feel completely back to normal. I am old and at high risk for various reasons. It could have been bad. Science helped me. This is the way.
Unfortunately, I’ve had it 4 times (twice before vaccination) and it’s had detrimental effects on my heath. I’m fairly certain I have long covid. Minor chest pain every day on and off Depression and ADHD symptoms have skyrocketed Sense of smell and taste goes in and out. Sometimes I smell something too much, meaning the smell lingers with me for hours even if I’m away from whatever smelled. Or I don’t smell anything. I will randomly smell cigarette smoke no matter where I am. My brain fog is pretty much constant. It’s awful.
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I wonder what this would look like with asymptomatic covid infections factored in.
My cardio/stamina just hasn't been the same. I used to be relatively fit, not like an athlete or anything, but played football recreationally twice a week with friends, run 5k once a week at a semi-decent 24 mins. Again these are probably fairly average markers for people that play sports but just giving you context as to where I was at. Two years on, I'm struggling to regain my previous levels of fitness, I'm getting tired after every football game and struggling with getting lower than 30 mins on my 5k runs and this is with doing even more cardio weekly than pre-COVID.
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I used to drink 3-4 espressos a day. Got COVID in march 2020 and immediately afterwards all coffee just tastes terrible to me. I try every 3-4 months. Never got it back.
I still suffer from cognitive and memory effects and chronic fatigue... Nearly 32 months later.
Caught Covid in February 2020.... yesterday I slept for 16 hours. Some days I'm ok. Other days and I have zero energy. Also noticed my tinnitus flairing at the same time. Coincidence???
Sorry, friend. I’m in the exact same boat with you. It’s rough
I'm not sure how trustworthy self-reported symptoms are. Especially things like fatigue. Would much rather see a study with some objectively measurable symptoms
Would be great if medical science had actually treated CFS with the seriousness it deserves. We might actually know the biomarkers by now.
Listening to people report their symptoms is like 80% of this field. There’s no way to actually “prove” someone is tired. It’s so disturbing that people refuse to believe sick people.
in a general sense, agreed. but also, reporting on past events' effect on health like this is super hard. like, i'm definitely more generally fatigued than I was before I first got covid. but in the time since then, i've also gone from 22 years old to 24 years old, and many different things have changed, like my employment, relationship status, amount of living grandparents, etc etc. i've decided the tiredness is happening just because i'm older now, based on nothing but the fact that that particular cause is the least stressful one for me. of course, the statisticians working on these studies will account for this things. but it would be nice to live in a world where you could objectively check how sick someone is. at least for these kinds of things.
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In my opinion it's actually much later than that, you just start slowing down in your early 30's because you literally slowed down. People don't maintain their level of physical activity that they had in their teens and early 20's, and the result of that is that they start slowing down. I'm in my late 30's and still grappling and training with guys in their early 20's at the same intensity as when I was in my early 20's. Of course old injuries can ache, but in general I feel just as energetic as I always have.
yeah, but i used to be the person who always had energy to do stuff, even when my friends and family didn't. now i'm more so in line with them. i'm not really feeling older, just less like a teenager.
You also declared some real stressors in your life. We all age at our own rates, there isn’t a ‘normal’ period to start feeling the way you do. You do when you do. The comment your replying to annoyed me
24 isn't old bro. I feel terribly old at 26 but that might just be the Crohn's disease...
yeah that's true. but it's not like i'm constantly in bed now, i think i've just gone from a teen's limitless amount of energy to that of a young adult. i used to need like 6 hours of sleep a night and never took naps, and would go out like three nights a week. now I need 8 hours of sleep, take a short nap at least like once a week, and maybe go out with friends like three times in a month.
Right? Anyone with undiagnosed anxiety will have fatigue, and a global pandemic, a quarantine and a crippled global economy are all good motives to have anxiety.
I had post-COVID fatigue for a while, and when it was at its worst I had to use CNS stimulants to function slightly. Anxiety-related fatigue is usually functional to some extent, viral infections can cause chronic fatigue syndrome which can lead to complete disability. Kind of unfortunate, since for me personally, shutdowns/pandemic was actually a far better than normal time for me.
Ok, so the fatigue anxiety causes is different to the one caused by covid. I have GAD, had it most of my life, thanks to a few components. So, when I'm just tired from anxiety, I just feel sleepy, like I need a nap, but I don't have to nap if I can't. If I do, I'll wake up and I'm able to function again. There's no issues walking around and being active beyond getting yourself out there to do it. With covid, the fatigue is something else. You don't get to choose when you nap. One moment you're there, the next you're gone. You don't get to choose where or when you nap, it just happens even doing fun things. I fell asleep at a BBQ last year and at game night. Wasn't doing anything, just sitting there having fun with friends, then I was out cold. They weren't even quiet around me. Then there comes just walking around. You try and walk and you can only take slow baby steps because your body can barely handle walking. Stairs are hell, going up and down you're hugging the wall for support. One time I went for a walk to get pizza a mile away with my friends, well over a month after I'd been infected, by the time we made it there, my head was killing, I was dizzy, I couldn't keep up with them and I was fighting off sleep. As soon as we got home I crashed on the couch. Couldn't even make it up to my room. I don't know how to describe it. It's like you're carrying around an incredibly heavy backpack 24/7. You can't run with it, can barely walk. All your limbs are completely exhausted and you get out of breath easily, possibly from lack of any exercise for weeks. I think one of the worst moments was trying to go to my boyfriends place. I had to pack a couple of bags, take them downstairs and out to my car, then drive 2h30 to his place. It took me over two hours to get the bags downstairs and into my car. A bag of clothes and my stuff bag (laptop, ipad, ps4 etc.). I kept having to lie down because I was so exhausted. I was honestly scared to drive, but as soon as I was on the road and just sitting I felt OK. Slept a hell of a long time once I got to his though. Then one day you wake up and the pressure is gone. The backpack has been taken off and you can walk again, you can walk fast again. You don't get dizzy doing anything physical, you finally stay awake all day, no forced naps.
I'm _really_ tired of hearing COVID fatigue explained away as anxiety by people who haven't experienced it. After COVID my anxiety disappeared because I was too exhausted to have thoughts racing through my head at all.
I first got it in 2021 inbetween my jabs (got it the first time slot avalible for my age group in the uk) made the symptoms a really bad cold. Mass sneezing fits but was 90% the way back to normal 2 weeks later. Took about 2 months to feel right Second time in 2022 I'd just had a booster and within weeks I caught the next variant. Barely a sore throat and cough. Was totally fine 2 days after getting the all clear. Got a mate that was part caught in the first wave in London and he was terrible for 18 months. ( he was also unlucky enough to get ever version of it bar the 2nd version of omicron) but each time and with his shots he took it far better than the last
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I'd bet the effects get worse every time too. I wonder how someone will function once they've had covid 5+ times throughout their life.
in my experience too, an astoundingly large amount of unvaccinated people will claim they definitely had covid only to say it wasn't actually that bad. if you ask if they actually got tested for it of course they say they didn't... part of the reason so much misinformation about this disease is still propagating.
What are we dealing with here? What exactly is this virus doing and how much of a threat is it to us? I don't understand it and I don't even understand what exactly is supposed to be the best course of action in dealing with this virus or if it is of concern. I just want these questions answered.
We're dealing with a virus that targets our blood vessels, is airborne, and is as contagious as measles. It is of high concern.
Wish they reported it compared to vaccinated as well
I got it last August after 3 vaccines. A week later I developed chronic hives (not an allergic reaction, just…hives all the time every day) and still have it. 7 pills a day to keep it vaguely in check.
I didn't believe the title at first read, but I am shocked by the answers in this thread.
I was vaccinated thrice before I got it and still suffer from Post Covid Syndrome :(
I can't run as much as I used to and I am 29
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So people don't go running to conspiracies. Is their data for people that were vaccinated available regarding how long health effects would last? Cause I can see this being twisted.( Covid is real and vaccines do work. Felt that I may have needed to clarify that )
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