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1374 Days – My Journey with Long Covid (2023)
- tehjoker 2y agoVery important to raise awareness of LC! Covid isn't over!
- s1artibartfast 2y agoIs it? Why? There are a lot of things for people to think about.
- AnEro 2y agoBecause most know someone that has had covid. Then still its not public knowledge it can be as debilitating as it is, even IQ loss and brain fog effect should be better understood by the public as well. Plus its not well researched so we should at least be trying to get the symptoms that are proven out there so we can get more information on it
- s1artibartfast 2y agoWhy is it important to know if someone you know has IQ loss or brain fog from COVID? Should that change how you treat them?
- AnEro 2y agoWell I don't think someone adapting to new disabilities or impairments should be punished for it. So if someone is getting PIP'd a few months after returning from covid and aren't performing, I think theres a lot of moral failings as a manager/owner/employer you can have if you don't take it into account. Also, why is it wrong to want to provide grace to those dealing with it? Like suddenly losing IQ or getting a cognitive impairment is a huge part of someone's life, there are non-invasive and non-condescending ways to support them
- everfree 2y agoI think it's important because a lot of people still don't know what it entails. For example, you say "cancer" and everyone has an idea of what that is. As of the 2000s/2010s, awareness has been rising about mental health and what it actually means to have mental illness. But if you say "long covid", most people still don't know what that really means to a sufferer of it. With its relative commonness compared to other, rarer yet more well-known illnesses (like DID), I'd say it deserves more attention than it gets. If we think of public disease messaging as having limited "bandwidth", it makes sense to message about the most common, newest, and least understood diseases, wouldn't you agree? The more the public understands what having an illness means for its sufferer, the more understanding the public will be of that person's needs and limitations, and thus the fuller a life that person will be able to live as their limitations are accommodated.
- s1artibartfast 2y agoI think learning the specific names and details is a waste of time. That is important information for the patient and their doctor, but not the general public. It doesnt add any value over the alternative of people having an unspecified chronic disease and requesting X accommodation, especially as accommodations needed or desired vary wildly To your point, people know the word "cancer" but have no clue what it entails or what accommodations a specific person needs or wants. People can march around raising cancer awareness, but it is also a pointless performative act for the benefit of the performer. If you have a sick person in your life and want to be compassionate, figure out what accommodation they actually want or need.
- jMyles 2y agoI think (hope?) we all agree that awareness of "long-covid" is important. But it's also entirely orthogonal to designations of a pathogen as being "over" or "not over". Coronaviruses have been with humanity for a very long time, and people have been reporting post-infection syndromes surrounding them - and have been ignored or downplayed - for decades now. There are five endemic coronaviruses, all of which likely started as an epidemic (two are documented of course) and evolved into what we call a "common cold", with susceptible populations suffering outsized effects. Now that we've finally (and I think we can say, successfully) achieved endemic equilibrium from covid-19, it's important not to lose compassion for those still suffering (and to perhaps bring awareness online regarding this syndrome going back a long time - some have been suffering for many years).
- tehjoker 2y agoWe have not achieved equilibrium. There is wave after wave, and people are getting increasingly disabled. The virus continues to mutate but we have dropped our defenses. Viruses become "mild" when they kill enough people for natural selection to take effect. That has not happened.
- jMyles 2y agoIs this also your assessment of hku1? How about h3n2?
- at_compile_time 2y agoSelection is acting on viruses as well. A virus that makes you very ill won't spread as well as one that makes you a little ill because there are only so many people you can infect while bedridden, and the trend among dominant strains reflects this.
- jMyles 2y agoSelection acts on viruses far faster than on humans. And this effect is observable to the naked eye at the population level, with multiple powerful examples in living memory. The comment to which you are responding is borderline nonsense in this respect.
- lambdaba 2y ago[flagged]
- verandaguy 2y ago> what do you have to lose ... Honestly? A lot. Your symptoms could get worse. You could turn a condition that's got treatable (if not currently curable) symptoms, into one with ones that aren't, or ones that are more severe, with worse treatment options. And then the burden isn't just on you, it's on your family and friends who have to either take care of you, or watch you suffer more. Long covid isn't nothing, clearly — but this kind of mindset is irresponsible. The "what have you got to lose" track is typically reserved only for people who have a terminal diagnosis, and even then, it's always a good idea to talk with your doctor about the pros and cons of the different experimental options you have access to.
- lambdaba 2y agoThat's quite an exaggeration. Why do you think the therapies should incur such a risk? Of course, it's on you to make sensible choices, but there are very large communities around long COVID out there, and the crowd makes a good enough job of sorting out what's legitimate and safe and what's not. Again, I'm assuming we are talking about people in a state of abandonment by the medical establishment, some unable to function at all. I can't understand the risk calculation here.
- verandaguy 2y ago> it's on you to make sensible choices Statistically speaking, you aren't well-equipped to make sensible medical choices. That's why we have medical professions — pharmacology, virology, internal medicine, and hundreds of others — each with people working in them with years of training and understanding. The question is less, "will X formulation work as a remedy for long covid," and more, "what effects will X formulation have on someone with Y and Z conditions, in their late 60s, having undergone this, that, and the other medical procedures on so-and-so timelines, and still on a course of this other formulation to abate chronic symptoms as a result of complications during one of the medical procedures they underwent?" This isn't really even a contrived example. Many people undergo medical procedures. Complications aren't common, but they're not rare, either, and they vary greatly in magnitude and long-term effects. A staggering proportion of people are on a course of some kind of medication (antivirals, pain relievers, more specialized stuff) at any given time. Figuring out how medications interact is aggressively nontrivial, and while there exist databases that can correlate medications and tell you if any are known to conflict with eachother (either always or under certain circumstances — information which, in most cases, was documented through case studies), this information still has to be reviewed by a trained medical professional — an MD familiar with the patient's medical history, ideally — who can say with a good degree of confidence whether a treatment is likely or not to cause the patient harm.
- bun_terminator 2y ago[flagged]
- verisimi 2y agoUnfortunately, yes. I still don't understand why it is impossible to consider the possibility that a medical intervention might in fact have consequences. Its obviously within the realms of possibility.
- nritchie 2y agoWe know that vaccines saved hundreds-of-thousands of lives. It is also possible that they caused a small number of adverse effects (although the signal for this is so deep in the noise to be effectively uninterpretable.) Focusing on the potential adverse effects just serves to muddy the waters for those who can put the many orders-of-magnitude difference in perspective.
- gwervc 2y agoVaccines tested properly yes. Experimental injections using a tech that never even worked in mice on the other hand has every reason to fail when experimented on humans. Btw at the time relatives pressured me to take the science juice I made a search in the national (French) vaccine adverse reactions and there was thousands of cases gone very badly, as far as death. Negating the issue isn't going to build any trust.
- at_compile_time 2y ago>We know that vaccines saved hundreds-of-thousands of lives. How do we know this? Is this based on modelling or are we extrapolating from vaccine efficacy trials?
- nancybelowzero 2y agoWhy would two shots be any more suspect than the 158 other supplements and medicines she has taken?
- subless 2y agoPhysics Girl on YouTube is still fighting it. https://www.youtube.com/@physicsgirl https://www.youtube.com/@physicsgirl
- bdamm 2y agoYeah, she was so active and productive and engaging as a youtube content creator. She is one of my favorites! So it's just stunning to see how profound whatever is happening for her is. She went from bright and engaging to basically a state of profound depression (I mean this in a physical sense.) Hopefully she finds out the whole picture some day, makes a recovery, and will do an extensive retrospective.
- goatmanbah 2y agoI do wonder how much of this is self-fulfilling atrophy. You're tired and sick, so you stay in bed. Then you get weak, making you more tired. Hopefully she can turn things around, regardless of underlying causes.
- 2924010774 2y agoIt sounds like for cases like hers, trying and pushing yourself to exercise only makes you weaker, not stronger. If you're curious, her channel has a number of videos about this.
- goatmanbah 2y agoI'll check that out. I know when I'm recovering from an illness I need to push myself a bit to regain energy. But it also makes sense that its not a universal experience.
- interroboink 2y agoI had an odd interaction with my doctor recently re: long Covid: he feels that we won't be talking about it much in 10 years, and I got the impression he felt it's not a "real" thing. Some points he brought up: (1) historically these sorts of reported effects often happen after an outbreak, and they taper off after some years, even though the original disease is still around and (2) it's mainly reported in women and young people, who are not the ones most susceptible to the original disease. I brought up that it seemed reminiscent of Chronic Lyme's disease, and he said that yes, that's also a very questionable diagnosis. I didn't really get into the weeds of that discussion, but it kinda put me off, since I have had several friends over the years who have had a hard time convincing the medical establishment that they have a real condition. Things like Chronic Fatigue, Ehlers-Danlos, Lyme's as mentioned, etc. There's this historical view that since it is mainly self-diagnosed women affected by all these, it's just a case of "women complaining" or somesuch (maybe not stated so directly) and not a real condition or mostly psychological. It gets dismissed, so it gets less research. Since it gets less research, doctors can say "there's not strong evidence to support it," and so the cycle continues. There's some sexism (and other -isms) inherent in the system, I do believe. It's entirely possible that women, for biological reasons, could be more susceptible to these system-wide hard-to-pin-down chronic issues. I really don't know; I wish there was more research being done. But it was just a weird moment where I got to witness that dismissiveness firsthand, from someone who otherwise I generally respect.
- Workaccount2 2y agoDoctors live and die by testing. If tests don't show anything, you don't have anything.
- shadowtree 2y agoIt's also because there is a stigma around mental reasons. "Hypochondria", "Hysteria", "Psychosomatic" ... all these words have negative connotations, even though the mind/body connection is a real thing. Would be a fascinating study to have Long Covid patients drop LSD and see for effects.
- bbor 2y ago
- sebazzz 2y agoI don't have long Covid I think, but in april I got sick (some kind of flu, but my covid tests were all expired and dry and I couldn't test). Since then I have had many light headaches, but annoying enough to cause bad quality sleep and degrading cognitive thought processes. The GP suspects it is some kind of result of a possible COVID infection. It is a very odd virus.
- 0xbadcafebee 2y ago> in april I got sick (some kind of flu, but my covid tests were all expired and dry and I couldn't test). Since then I have had many light headaches, but annoying enough to cause bad quality sleep and degrading cognitive thought processes. The GP suspects it is some kind of result of a possible COVID infection That's long COVID.
- timbit42 2y agoYou can still used expired tests. If it shows positive, you have COVID. If it shows negative, you may or may not be positive.
- sebazzz 2y agoNo, the testing fluid was literally no longer present in the test.
- decasia 2y agoI'm surprised there are people here who are skeptical that long covid is real, as I know plenty of people in my community and social network who have been dealing with it. There is national-level health guidance about long covid — I don't think it is very plausible that it is a simply "imaginary" problem: https://www.cdc.gov/covid/long-term-effects/index.html https://www.cdc.gov/covid/long-term-effects/index.html
- deleted 2y ago[deleted]
- ljsprague 2y agoAm I allowed to be skeptical if I don't know anyone that claims to have it?
- swed420 2y ago> I'm surprised there are people here who are skeptical that long covid is real I'm not surprised at all, considering there's been a consistent drive to move past COVID in the name of our poorly designed consumption-based economy and political expediency: https://www.thegauntlet.news/p/how-the-press-manufactured-consent https://www.thegauntlet.news/p/how-the-press-manufactured-co... https://www.thegauntlet.news/p/media-celebrated-long-covid-awareness https://www.thegauntlet.news/p/media-celebrated-long-covid-a... https://web.archive.org/web/20240802024326/https://docs.house.gov/meetings/VC/VC00/20220302/114453/HHRG-117-VC00-20220302-SD009.pdf https://web.archive.org/web/20240802024326/https://docs.hous...
- red-iron-pine 2y agothegauntlet.news does not seem to be an especially credible source, and OP's account is just over 1 year old with only 68 karma. most of the posts appear to be a handful of sites like the jacobin or thegauntlet, and all happen to have socio-political axes to grind. and a couple of basic posts about jellyfin to look legit. color me skeptical.
- swed420 2y ago
- everyone 2y agoReminds me of this article that was on here ages ago https://news.ycombinator.com/item?id=13851015 https://news.ycombinator.com/item?id=13851015
- andy_xor_andrew 2y agoit's definitely an interesting topic, because my skeptical mind is easily split in one of two ways- either 1) it's a real phenomena that is under-diagnosed and ignored by medical professionals (something I believe happens) or 2) it's not a real condition and patients who suffer from it are suffering from a mix of mental illness combined with other real diseases that are exacerbated (something that I believe happens) both sound like very real, very possible problems, and neither one seems more likely to me than the other. Or perhaps it's a big mix of both, on a case by case basis.
- dangerwill 2y agoI really wish that Tech people would not go outside of our purview to comment on medicine. Knowledge about how to build and maintain software does not give us any useful intuitions or insights into medicine, but the gigantic egos in this industry turn us all into pundits about what other professions are doing wrong. Stop trying to second guess and cherry pick medical studies that you half read.
- lisper 2y agoThis is an amazing piece of work for the graphical displays and data gathering completely independent of the compelling story of extended human suffering it presents. But -- and in no way do I mean this to detract from the quality of the work or the reality of the suffering -- I have to wonder what motivated the author to start tracking their symptoms so early if they were initially mild. This data is only interesting because it developed into a chronic disease, and there's obviously no way she could have known that would happen until much later. So why start keeping such meticulous records so soon?
- simonebrunozzi 2y agoI know her personally, she's been forever obsessed about personal journaling and data.
- runjake 2y agoI would like to see more scientific study on the matter. I suspect it is probably a real, but rare thing, and that the vast majority of suspected cases are largely due to physical inactivity. I myself had my first infection in March 2024 and had "lung capacity" issues for several months afterwards (~November 2024). I saw doctors about it, but they were largely dismissive, stating I needed to do more exercise, when I was in reasonably top physical shape (MMA 4x a week). I felt like I was on my own, took charge, did my own research. What seemed to end up helping and get the "junk" out of my lungs was regularly using a spirometer on my own and, perhaps not wise, doing intense (as best I could muster) runs, which would cause me to cough up some of the awful-tasting fluid. It ended up working out well for me and I'm back to my former capacity.
- bad_username 2y agoSimilar story. After something that felt like a recurrence of a mild covid strain - persistent cough and chest discomfort. I doubled down on my running routine, making special effort to inhale and exhale as deeply as possible as I exert myself. Gradually I "coughed it out". Very possibly it's a councidence, but the extra exercise never hurts after all.
- 2924010774 2y agoI don't think people get how difficult it can be to interact with doctors when you have a chronic illness. In high school, I started to get debilitating joint pain. I had trouble walking, typing, or writing. I went to many (at least a dozen) doctors. Most of them were unsympathetic and accused me of trying to get access to pain pills. Or told me that "this is just what puberty is like." Eventually, I happened upon _one_ doctor who gave me some blood tests and I tested positive for Celiac disease. Treating that fixed my joint pain. Celiac disease is not a rare disease--it affects 1% of the US population--yet most of the doctors I saw didn't even think to test for it, despite join pain being a typical symptom. Instead, they gaslit me into thinking that it was "all in my head." Clearly they were wrong, and I have the blood test and endoscopy to prove it! I'm a member of a "Young people with chronic illness" meetup, and my story is absolutely the norm. People who have conditions with clear and measurable diagnosis criteria go through many doctors telling them nothing is wrong before they find a doctor who will run tests. I can only imagine how much worse it is for conditions which are diagnosed "by exclusion" or something else that's not cut-and-dried.
- deleted 2y ago[deleted]
- ChrisArchitect 2y ago(2023) probably up to ~1700 days about now since COVID isn't over.
- red-iron-pine 2y agoI believe it. A couple of years ago I did an EKG as part of a routine physical -- cholesterol tests kept coming back a little high and heart disease runs in my family. routine test, results came back I was fine. did the gym 2-3 days a week, walked a lot, no big deal, just eat less fatty foods. then got COVID bad over the holidays. knocked me on my ass for about 2 weeks. blew through several boxes of tissues, got everyone else sick, etc. did a physical again, cholesterol high again. told them I had the 'Rona bad over Xmas and they had me do another EKG. definite irregularity. ended up at the cardiologist, did a stress test, sleep study, reparatory test, etc. verdict is that something damaged my lungs and/or heart and impeded my ability to absorb oxygen, and the best guess was COVID. I've made a pretty concerted effort to walk more and get back to the gym, but I gas out pretty hard and simply can't do long runs like before (though I'll concede it's getting better).
- spants 2y agoQuestionS: -Does anyone who hasn't been injected suffer with Long Covid? -Do many people who have not been injected get multiple covid infections?