To the skeptics in here: As someone who experienced long COVID for almost 12 months, the first problem is that most people won’t even get diagnosed with long COVID.
I’m lucky to have had the time to research a lot on my own and find private healthcare to get to the bottom of this.
My initial diagnosis was stress and a second attempt allergies. Took me six months and tests to finally get a diagnosis.
Before I got a diagnosis, I was ashamed of telling people I had self-assessed myself with long COVID, it honestly sounded crazy at the time.
Now in some good news, I did fully recover after 12 months.
Rather than dismissing long COVID, I would ask that we at least accept we do not fully understand COVID. This is not to create fear, but to avoid dismissing suffering some are still experiencing.
I don’t think I was ever exposed, but I spent so much time indoors and away from organized athletics that my endurance was sketchy by last summer, at which point I did a project that involved a lot of dust and it just wrecked me. Bunch of tests including COVID and found nothing.
I haven’t said this out loud to anyone before, but I’m starting to worry how many of us are going to dodge COVID but catch complications from a sedentary, high stress, low socialization lifestyle. And for myself I know I’ve had a lot less variety in my diet not going to work and not making the rounds of various restaurants. Some large fraction of my vegetable intake, and the majority of the variety, coming from cycling through several different Asian cuisines per week.
I’m starting to worry how many of us are going to dodge COVID but catch complications from a sedentary, high stress, low socialization lifestyle
I've wondered the same thing. In the end I think fewer people will have died than had we taken the alternative route, but that doesn't necessarily mean we're not going to face negative consequences. It's been over two years already and I would say I'm just now learning how to really WFH and get out and socialize. I think we're all going to be better off in the long-run by not centering our lives so much around whom we work for, but it's going to take time to get there. This is a huge cultural shift every bit as impactful as when we moved from the farm to the city!
I had a random virus in 2010 that made me very sick for about a month, the doctors thought it was mono. I fully recovered, but then for about 2 years after I slept 12 - 16 hours a day and was tired all the time. No other changes.
Completely resolved itself over a couple of months, after about 2 years.
> To the skeptics in here: As someone who experienced long COVID for almost 12 months, the first problem is that most people won’t even get diagnosed with long COVID.
This is very much the case. A friend of mine has a bag of symptoms and the smallest hypothesis to explain them is long COVID. Or a sudden, but severe, onset, of several usually live long conditions like allergies and respiratory problems after a case of bad fevers. However, since they were never diagnosed with COVID, they will most likely never be diagnosed with long COVID. It's just a strange increase in respiratory problems in adults.
My partner had a very mild Covid (only 1 day in bed) but 2 weeks after the infection she started with the long covid symptoms.
She had oxygen drops below 80% many times a day and had problems to even talk without running out of oxygen. Pain in the chest, chronic fatigue, lack of memory + concentration and absolutely all the symptoms associated to long covid.
It has been a nightmare, the first GP was blaming her for smoking or not doing sport (both false), the second did some tests but he said nothing can be done and the tests were inconclusive.
Finally she went to a physiotherapist who saw her condition and said that no action was unacceptable. He found a physiotherapist who is specializing in long covid, he monitors her condition at muscular level, recommends some exercises and not much more because little is known. But at least he keeps up to date and investigates.
Now it’s 5 months already and she went from having the strength of a 80+ year old ill granma to a 40+ with CF… she can now walk slowly and talk without losing breath. But still her body and brain are not working even at 50% than before.
I've got two friends with "long H1N1". Both very productive members of the workforce that have instead been living on disability for 13 years. If that's going to be widespread the productive capacity of the country is going to take a big hit.
My big hope is that a heightened interest in these syndromes can finally help my friends.
Your friends have ME/CFS. H1N1 was a precipitating factor that triggered it, but it's no longer relevant to the perpetuation of the illness.
If they want help from the traditional medical system, then Mayo's Chronic Fatigue Clinic offers a decent overview of what can be done and they have a good track record of helping patients achieve total or close to total recovery. But the process is not easy and involves several wholesale lifestyle changes for a sustained period of time (6-12 months) and then what is essentially a lifelong commitment to managing personal wellbeing.
Only one of the two has ME. The other has Guillan Barre. Didn't mention it because of its association with vaccines, even though it is much more commonly caused by viral infection.
> Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and sleep problems.
> Symptoms and DiagnosisWhat is Me/CfsTreatmentplus iconME/CFS in ChildrenCDC's ME/CFS Program
> What is ME/CFS? | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ...
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have overwhelming fatigue that is not improved by rest.
Yes! Viral injury is not a new thing but Covid certainly has brought it to the forefront. Most people maybe remember learning about post-polio and have heard of other viral injury but I think it's a valuable thing that it's getting more attention and research. For me it was Coxsackievirus. It's so very unfortunate that the awareness is coming at the cost of a lot of suffering.
I mistook H1N1 to be a reference to COVID-19 hence assumed parent had mistakenly written years instead of months. The mistake was mine. H1N1 is swine flu which indeed goes back years.
Not that anybody's going to see this now, but I apologise for mistaking H1N1 in the parent for COVID, which is why I assumed they had made a mistake (years/months). For anybody else who like me assumed so - H1N1 refers to swine flu.
> Third, COVID-19 vaccination status was not considered in this analysis, nor were potentially confounding factors... because data were not available, were inconsistent...
It would be an earthshattering event if vaccines were causing long covid (which comes from covid infections) because of how totally insane of idea that is. Like, way off the deepend into conspiracy-land.
"There's a new study out from the NIH (open access) tracking a cohort of people who became infected with SARS-CoV-2, and following them for an extended period... As mentioned, this is an ongoing study, but so far there are no diagnostic findings that would allow you to even say for sure that post-Covid even exists, biochemically."
I used to be a skeptic until I got it. I was one of the unfortunate 20% who struggled for almost 14 months before feeling back 100%.
I had every symptom you can think about. Heart palpitations, gastrointestinal issues, chest tightness, chronic fatigue, muscle soreness, and much more. I’m an active 30 year old who loves to exercise. I even saw a sudden drop in my running performance too. (About 20% or 2 minutes)
I saw a number of medical professionals only to be told nothing was wrong with me each time. I couldn’t find an answer, so I had to go find one myself. It seemed that no medical professional wanted to touch the “C” word even though hospital policy tells you to speak up about it. Which I did each time.
Perhaps one day we will know much more about long Covid and why it happens, whether that’s virus still hiding in the body or the complete shock it has on the nervous system.
The good news of this all is that my second time going through a milder version of Covid had me recovering after about a week instead of on and off again symptoms for more than a year. I found many good habits through a year of struggling that I’m thankful for.
When I first got covid, it felt like a punitive mark such as a scarlet letter. I was so ashamed. That also didn’t help.
Perhaps it was all a combination of getting a virus, the stress that had at the time, and the pressure to keep living life as normal when I’m operating at 80% for a year.
At risk of getting downvoted into oblivion, I suspect that we will eventually find a large number of individuals with long term side effects of the vaccines at varying levels of severity.
I personally came down with three separate, new, health problems less than a week after getting the first dose of the vaccine (two mostly better within 6-9 months, one still lingering and without any particularly effective treatment). My wife had a similar experience.
This isn’t something that’s going to show up in vaers or elsewhere because these are relatively common ailments, and other than the temporal relationship there is no way to say that they were or weren’t actually caused by the vaccines.
On balance I don’t doubt the evidence that shows that the vaccines are able to reduce the severity of covid itself, but I do wish that as a society we wouldn’t be so dismissive of the concerns about the baseline safety profile of these vaccines.
The problem is that people with “concerns” aren’t always acting in good faith when they “just ask questions” about the safety of vaccinations. They make basic mechanistic errors. Or they falsely claim that some safety steps were skipped during approval. Or they cite observational studies while ignoring much stronger double-blind trials. Or they don’t properly apply statistics. The list goes on and on. When shown contradicting evidence, they don’t change their mind, or trust their mistaken sources less — they go on to the next BS talking point they read on Telegram.
If a reasonable, reputable scientist had legitimate concerns with the safety of the approved vaccinations, those concerns would be blown out of proportion by the antivaxx community. That is why there is so much-self censorship in this debate: no actual scientist wants to be responsible for potential illnesses and deaths because their academic concerns have between twisted and deliberately misinterpreted.
I have two deaths in the family due to pulmonary embolism. One the first week after the first AstraZeneca shot, the other after the first week of Moderna booster. Another one had a stroke just the day after the booster, and is still unable to talk or walk.
Now like most HN users I know my statistics and I guess we've just been unlucky or it's all a coincidence, but my emotional response is to never take one of those things again.
> Or they falsely claim that some safety steps were skipped during approval.
It’s disingenuous to suggest safety steps were not skipped. You can find the safety steps that could be skipped in the FDA’s guidance for industry: https://www.fda.gov/media/139638/download
I actually think very likely the effects of long Covid aren’t going to be evenly distributed. I would be shocked if 1 in 5 of my highly educated, knowledge-worker cohort, with the wealth to afford to minimize exposure (from ordering delivery to buying masks to having the time to fill out vaccination appointments) would be affected by Covid much less long Covid.
However, I’m more or less certain that this is much different for service workers, undocumented immigrants, the homeless, people who couldn’t afford to be in good health to begin with, etc. I know couples where both people developed long Covid, and they had disabling chronic illness to begin with. And their social circles where they get support and community for their conditions are similarly ravaged. It’s apparently devastating.
I live in a southeast Asian country that has seen Covid infect a large portion of its substantial urban population. (Among my acquaintances, close to 100% have had Covid within the last year, some multiple times. I've had it three times myself over the last 2 years.)
Many people here live with chronic illnesses, and healthcare access & quality is highly variable.
There is zero discussion of long Covid here. Nobody reports any symptoms, no media talks about it, no medical resources are being spent on it. This is strange, because one would expect that if a problem were merely being ignored, there would be visible effects of that.
So I'm honestly unsure what to think about long Covid. There's "something there", but so many unknowns.
I self diagnose myself with attention disorder (towards the uninteresting), muscle fatigue (only at work), mental exhaustion (except for videogames), extreme sleepiness (getting out of bed is near impossible) and social aversion (everyone that I talk to tries to convince me to take a bath or something equally terrifying). I also get sick easily and only drink energy drinks. I'm so sad all the time and have no plans for the future but if I wasn't afflicted by this condition I would be a productive person, I swear!
Am hyperboling but the difference between being raised to think you're a victim and actually suffering from something else is difficult to get right. Infant traumas can lead people to become so daringly incompetent they think they have a problem other than needing psychological help. No one likes to realize they are stupid but the stupider you are the more it hurts.
The existence of medical conditions existing with no bio marker test is a globally understood phenomenon with established medical jargon and broad acceptance.
I don't have the original source but I read about a double bind test of one of the COVID-19 vaccine side effects. Only half of the test subjects received the vaccine (the other saline), but something like two thirds of the test subjects reported side effects. There isn't any doubt that long COVID is real, but it's more than likely that many of the people that report symptoms don't actually have it. There has been so much talk about long COVID in the media, that people expect to have it; so the media is working as a nocebo.
1/5 doesn't really say anything about distribution on its own. Maybe the 1/5 are all 70+ or maybe they're all on the west coast or all on the east coast. Or maybe it's all low-income.
There are lots of ways something can affect a huge percent of people and yet you never see it.
When you see an article saying that, please share it!
So much of the stuff I see just seems to discuss a post-viral syndrome that lingers for quite a bit longer than the acute infection, which is a phenomenon we recognize from other serious viral infections but haven’t historically invested a lot in studying.
This “never recovers” thing you talk about would be fascinating, especially with us only being a couple years into the disease circulating. I’d love to read the science behind that. You have any specific articles you remember?
This article isn't about "eternal COVID" or "never recovering". It's about some symptom existing 4+ weeks post-infection. For some people, that means months. For others, it could be a single month. Maybe for some it's the rest of their lives, but this article makes no claims to that effect.
The media stopped reporting on new variants doesn’t mean there haven’t been new variants. I think you’re conflating media not covering new variants with new variants not existing. My understanding is that there been at least two new variants of omicron.
> What's also odd is that new variants have just stopped. Just haven't heard of a new variant in along time.
> Its like Covid ended when the media quit reporting on it.
So it’s probably just my fault for reading my dumb local California papers where three rising omicron subvariants are feature stories and there’s concern about a clear rise in cases and hospitalization, but I’d totally love for Covid to end if it just takes some silent media to do so.
Can I read your papers instead? Which ones are you reading?
I’m lucky to have had the time to research a lot on my own and find private healthcare to get to the bottom of this.
My initial diagnosis was stress and a second attempt allergies. Took me six months and tests to finally get a diagnosis.
Before I got a diagnosis, I was ashamed of telling people I had self-assessed myself with long COVID, it honestly sounded crazy at the time.
Now in some good news, I did fully recover after 12 months.
Rather than dismissing long COVID, I would ask that we at least accept we do not fully understand COVID. This is not to create fear, but to avoid dismissing suffering some are still experiencing.