I spent two years in bed, sometimes sleeping 16 hours a day and feeling like passing out just from walking 100m. All my tests were fine, all doctors thought it's just "anxiety" and basically ignored me until I had what looked like a stroke when they started taking it slightly more seriously. However, given all the tests were OK I went in circles from one doctor to another when I had better days, or being completely bedridden when I hadn't.
Then one day I got finally upset by my deteriorating state, started taking about 50 different supplements with any "word-of-mouth" evidence from Reddit forums from folks claiming it helped them, started slowly doing daily rowing machine workouts and within 1 month I was 1000x better.
I really think medical science gets many things wrong and knows only a small piece of puzzle on how the human body works, and people with long covid are stuck in that knowledge gap.
I can relate about physical exercise—I had debilitating long covid symptoms for about six months with no end in sight. Could not work out, had to plan climbing stairs around my schedule so I'd have 20 minutes after to recover. Until I was forced to go on a business trip to Europe for two weeks where I was walking 20-30,000 steps a day and carrying luggage everywhere. Afterwards I felt 80-90% better, it was crazy. Still no way to know if that was just coincidence or not, but I keep seeing anecdotal stories about physical activity being key.
This is actually a good point. Not necessarily true for everyone, but it can be caused by avoiding physical exercise too much after being sick for weeks. It mimics/triggers depression and you feel sick/bad because of that. Had that pre-2019, so it sounds very familiar. I felt sick for months and when I had to ignore it, it went relatively quickly away (in a few days really).
Some might call this psychosomatic, but I feel like calling it like this is maybe reversed or at least sounds reversed to me as the physical state triggers the psychological condition and can then start a vicious cycle, which is only broken on the physical level.
edit: Of course don't go full tilt and be sensible with your physical exercise after not doing anything (lying in bed) for a week or more. Even a walk in the park can be exercise!
I don't think it's psychosomatic because it mirrors other physical injuries in weight training.
There is a threshold beyond which an injury becomes too severe and requires proper rest, an immobilizer, and physical therapy. It requires a little bit of experience to identify those injuries but below that threshold it's better to soldier through the pain with lighter intensity exercise that works the injured muscles.
A safe example is working through delayed onset muscle soreness.
With LC it's difficult when you get POTS, i.e. my resting HR was 60 and the moment I stood up it shot to over 150, making me dizzy and super unwell. Rowing machine and electrolytes helped quickly though. Also, post-exertional malaise (PEM) is real, when I overdid it with sport on my good days, I paid by a week in bed unable to move. Pycnogenol/OPC turned out to be a great help with that.
Full tilt meant 200m walk in the park -> instant PEM. When you have no clue what is going on, stop applying your basic recipes on new health issues from pandemics, you would literally harm other people that could suffer because of your silliness. Imagine this condition being more like being at 3/4 of slow dying from asphyxia on Mt. Everest. It felt like I was 70 years older and started understanding what old people go through when their body stops functioning properly. I am pretty sure there is some oxygenation issue as when I went to high mountains and left the gondola at the top of the mountain, I almost passed out from lack of oxygen and that was only like 6,000ft difference. That corrected once I went back to the valley so I could limp back to my hotel.
> When you have no clue what is going on, stop applying your basic recipes on new health issues from pandemics, you would literally harm other people that could suffer because of your silliness.
How can my comment harm people? It didn't say that walking (any distance) is the only or the lowest exercise possible nor did I say that lack of exercise is the only explanation to begin with. Actually the opposite is implied and taking a walk was an example for something that is usually not considered exercise.
I was reacting to your edit when it became clear you didn't consider that just a short slow walk can send LC people to a bed for a week, i.e. physical activity is not an answer for people suffering from it.
Definitely I think the psychological aspect plays a key role. I have not kept up with the Covid-19 literature in the last year and a half, but I recall many women reporting that it disrupted their cycle. In fact, my partner contracted Covid-19 and had an altered period for a few months and developed acne for the first time in their life. So it would seem hormones are being messed with, which can really mess with your emotions/mental state and like you say, could jumpstart a vicious cycle.
Even if it is "all in your head" doesn't mean the problem will magically solve itself just by thinking about it.
The brain is a physical organ. It needs oxygen and nutrients, it reacts to all sorts of chemicals, etc... If it is "in my head", ok, but what is wrong with my head? Are my hormones messed up? Is oxygenation correct? Are the neurons in good shape? It you don't know what's wrong with my head, how do you know that's in my head?
The idiotic thing of it is, of course everyone lives "inside their head". It's where consciousness lies (unless you're an ancient Egyptian and believe it comes from the heart, which is "just" the muscle that pumps blood around, and isn't packed full of neurons). So it's a stupid statement to begin with. I live, as do you, and everyone else, "inside my head". I literally can't leave it. 24/7, I'm in my head even when I'm sleeping, I can't escape it. And neither can you. All of my perceptions, everything I see, touch, or smell is filtered through my brain which is in my head.
What's odious then, isn't the statement itself, but the implication that I could just "shake it off" with just the right set of magical thinking. The problem then, is everybody who claims "it's all in your head", proclaims the problem solved, and walks off with their fingers in their ears, not listening to people suffering, not helping them "get out of their heads", not even trying to help get to that place of magical thinking that would fix everything.
They say the solution is "in your head". If it is, they're a right shite bunch of bastards for keeping this magical thinking to themselves and letting the rest of us suffer. If instead we focused on listening to the people suffering, and have identified that it's in their heads, then how do we get them out of it? How do we expand their consciousness to be "outside" their heads? How do we modify their brain so the head they're in is different? We have all sorts of drugs for that, both legal and illegal, as well as a host of new therapies, some approved by the FDA, as in "has a scientifically proven effect", using magnetic fields applied to the brain, eg TMS (Transcranial Magnetic Stimulation), to help people get their heads, which they live 24/7 in, to be different ones than the ones that are giving them so much trouble!
Thanks to doctors actually listening to patients (which is a revolutionary concept, I know. Not all doctors are super geniuses, but the ones who are able to listen to people who's problems are "in their heads" are all smarter than those who dismiss people's problems for being "in their heads". Especially neurologists, who have dedicated their career to the study of what's inside heads.), people are getting better, healing the brain, and once again living fulfilling lives, with more than 3 spoons a day of energy. At the worst of it, watching Netflix was too exhausting. Concentrating enough to write code was out of the question. After TMS, powerful psychiatric medication, a course of psilocybin and other off label courses to help me "get out of my head", and a huge amount of talk therapy on top, I'd now consider myself cured of whatever lingering after effects of Covid and the pandemic I suffered. It took a lot of work, I still live "in my head" but I'm able to leave my bed enough day of the week, and even leave my house most of them as well.
Feel free to tell me my problems are in my head so long as you're going to help me get out of it; help me pay for doctors, help me get to the doctor, help me pay for therapies and therapists and actually get to them, help me navigate insurance and get on disability while I need it, help me with housework while it's too much for me to manage.
"It's in your head" is the beginning of helping to figure out how to solve the problem, not the solution it and of itself.
> The problem then, is everybody who claims "it's all in your head", proclaims the problem solved, and walks off with their fingers in their ears, not listening to people suffering, not helping them "get out of their heads", not even trying to help get to that place of magical thinking that would fix everything.
I think that a lot of this is reading into attitudes that arent really there. Doctors see a lot of people, and when they determine that an illness is phychosomatic, there is nothing they can do about it. There is no treatment they can proscribe, no medicine that can make it better. People have tried all sorts of tests for helping people with psychosomatic
issues. It turns out these instances are specific to people and their circumstances.
So after they determine the illness is in your head, and then leave it at that without helping, it sure can seem cold. But think of it from their perspective; what else could they do?
There is plenty doctors can do about it. We have a vast array of medications that address "the head", from anti-psychotics to Zanax. They're the one with the MD, they're the one with the ability to prescribe medication, not to mention TMS and other therapies.
If someone had to get a limb amputated, we don't just throw them back out into the wild and say "have a good life!" We give them occupational therapists and caregivers to help them live their new life.
Even if they don’t, they will always keep “it’s all in your head” as a possibility until they can rule it out. The problem is that it actually turns out to be that some percentage of the time. And of course, there are varying capabilities of doctors with varying knowledge who have different chances of figuring out what really is wrong with you. ChatGPT might be an improvement here.
This screams more of a institutional bureaucracy issue and less a medical science issue.
GP's are part of a system that requires they churn through a lot of people quickly. this dramatically lowers the in depth research and reasoning they can perform.
I think it is certainly true, but I also think that lay people significantly underestimate psychosomnia and the power of placebo and having a more active lifestyle.
This was very different; prior to that I used to do 1-2h of strong cardio or lifting activity a day, was studying at multiple universities and worked multiple consulting gigs. This was like being hit by a train suddenly, going from hero to zero. I've noticed that positive thoughts helped but I attribute it to brain being low on processing power and negative thoughts taking more processing power/energy, causing even more problems. I had a stroke-like experience where I could no longer read text, locate symbols, follow visual clues which told me there was some problem with visual cortex VC2 or VC4 and I could perfectly see delineation between different "algorithms" running in my brain for visual processing and they seemed to be running low on fuel. Quite amazing experience for a Deep Learning researcher but would never wish it to anyone.
Yes, was just trying to comment on the overall broader critique of the medical sphere you were providing. Your story sounds very personal to you and I am not commenting on that.
I really think it's the other way round, a physical issue that might manifest in some psychological phenomenon due to a lack of brain processing capacity and doctors just take it the other way round, because it's much easier to put an "anxiety sticker" on someone than figure the real underlying problem out. There are even some psychiatrists that consider all mental issues to be problems with brain metabolism, i.e. physical problems manifesting in psychical ones.
> There are even some psychiatrists that consider all mental issues to be problems with brain metabolism, i.e. physical problems manifesting in psychical ones.
Yes, because medicine is ultimately a customer-serving profession, there will be plenty of people saying the things that people want to hear because they are paid to retain customers and people elevate things that are similar to what they want to hear.
People are very uncomfortable with the mental, hence it is now popular to hear very mechanistic explanations of why someone is depressed, etc. about 'brain chemical imbalance' because it makes someone feel less like it is something wrong with who they are as a person (the mind-body dualism is still very present for most people in Western cultures). Of course, ultimately everything (including the functioning of our mind) is mechanistic, but people seem to be more comfortable with very mechanistically couched explanations as compared to 'something is wrong with my mind!' even when the implications aren't all so different.
LC research shows that there are at least three factors going on that might affect functioning of the brain:
1) damaged endothelium with possible microclots clogging up small vessels
2) spike protein reservoir likely causing cellular-level iron deficit (anemia)
3) mitochondrial dysfunction
Some recent research even shows brain hypoperfusion and different levels of oxygen in each hemisphere!
Now ignoring these factors is in my opinion lazy science and a convenient way for medical professionals to state "it's not my problem, go somewhere else, I just want my regular routine without any complications. Go see a shrink".
> This was very different; prior to that I used to do 1-2h of strong cardio or lifting activity a day, was studying at multiple universities and worked multiple consulting gigs.
I'm going to suggest that with this intense pace this might have happened one way or another. Take it from someone who has been there.
When we push too hard for too long, and ignore our bodies and minds pleas for rest, at some point the body is going to put the brakes on us.
I don't think this is necessarily COVID specific, my speculation is that long COVID is the kernel around which the fatigue episode crystallised, and thatif it hadn't been COVID it would have been something else.
My theory is that as COVID depletes a month-worth of NAD+ in like 3 days, it leads to energetic deficit throughout the body, and the weakest links start failing first. So I assume I had some predisposition coming from my intense lifestyle and COVID just initiated the domino effect. I wish I knew about NAD+ prior to that, I might have skipped it altogether if I resupplied it right away.
Interesting theory but I wouldn't be so sure. I've been through healing journeys where the websites suggested all sorts of deficiencies and supplements, but in the end I came to believe I just needed to slow down.
We know that COVID depletes NAD+ reserves and NAD+ is the main electron transport molecule in the body (second one is FAD+ in some cells in the brain). So if you suddenly run out of electron transporter, it would inhibit most of your systems, making you tired all the time, and the systems that are already operating near their maximal capacity will start failing. This might kick off a chain reaction that is later transformed into condition we call long covid. It would also explain why it is different for each person as everyone has different organs in bad shape and why people with certain organ damage have similar symptoms.
I can speak from experience having gone through a healing journey where the online sites promoted a single supplement as the cure.
I later felt that this focus on this 'replace lost nutrients' approach, while it might have had some merit in the acute phase, also kept some people in denial of the factors which led them to their health crises.
> I really think medical science gets many things wrong and knows only a small piece of puzzle on how the human body works, and people with long covid are stuck in that knowledge gap.
The vast majority of medical researchers agree with you.
> started taking about 50 different supplements with any "word-of-mouth" evidence from Reddit forums
Just taking every chemical under the sun because some random jane said 'hey it worked for me' is not better, obviously.
Anti-quackery activists and doctors in general are telling you that taking a boatload of supplements based on ads and shills is unlikely to help (you got real, real lucky here), and is quite likely to cause serious damage, and also takes you mostly out of the medical sphere of influence entirely - whatever weird results come up when medical professionals run some tests are now tainted by all the stuff you are taking.
An entirely separate problem is that a combination of an ever expanding menu of medical interventions that we (humanity) knows about and an aging population means that healthcare as a principle is effectively unaffordable without massive tax increases which the population votes against. Hence, the healthcare that can be provided is gruff and fast, and cannot cater to complicated cases like yours. Which has to be very frustrating for you.
So if I understood you correctly, you are complaining I got better because I took supplements without a prior medical professional approval because other folks discussing long covid reported improvements from taking them? Cycling through dozens of specialists across two years without a single one finding anything, yet barely existing? Did I spoil your pristine machine learning dataset? Are you serious?
Between the supplements and the rowing, do you have a sense if one or the other had a greater impact?
Asking because "take a multivitamin" and "exercise daily" seem to be very standard pieces of medical advice. "Take 50 specific supplements", not so much.
I think it was all of them together, I basically tried to go all-in as my previous partial attempts never turned into stable improvements. I don't think without rowing machine I would get better as I wouldn't improve my blood flow, but the exercise alone didn't lead anywhere before (I tried it for 3 months a year before that).
I had somewhat of a similar experience treating a different condition I had. I wanted to take the scientific approach of taking one supplement at a time and measuring my response, but I ended up taking everything at once, and that worked wonders. But I'm still not sure if it was one specific thing that did 90% of the heavy lifting or if each one did 5%.
Read this, the doctor had only success if he combined multiple things together and has lab data showing no effect when either of them was taken separately:
> I really think medical science gets many things wrong and knows only a small piece of puzzle on how the human body works, and people with long covid are stuck in that knowledge gap.
Medical science is definitely limited. Studying a human system is essentially reverse engineering combined with something we can’t create in the first place. So doctors accumulate data, somehow make progress on life expectancies, but still a lot is unknown, and they don’t really claim otherwise.
I switched to carnivore 100% for a month when I started improving. I was taking mitochondrial supplements like megadosing B1/B2/B3/Niagen/NMN, CoQ10 + PQQ, L-carnitine, R ALA, pterostilbene. I took 1000-2000mg bovine lactoferrin with up to 120mg iron bisglycinate and 25-50mg benadryl for nights. I mixed my own AXA1125 (BCAA, Glutamine, NAC and Arginine + vitamin C) and took about 50g a day of that. I took endothelial stuff like nattokinase, serrapeptase, aspirin, diosmin:hesperidin, aescin, curcumin, quercetin, K2, ginkgo, pycnogenol/OPC, omega-3, kyolic, hawthorn berry. I ate 1 non-sweet chocolate a day (100% Lindt) to raise adiponectin and PQQ. I took like 5g of magnesium bisglycinate and potassium citrate a day. Daily workout was important even if it sometimes went to painful headaches which I controlled by ibuprofen and tylenol (the first two weeks were particularly horrible). Lately I added stuff like astragalus, artemisinin, dandelion root, boswellic acid, trans resveratrol, red beet, PEA + luteolin. I feel 1000x better than in February when I thought I could die at any moment.
Good luck unpacking all of that and coming off of it. A few of those things you probably shouldn't be on (daily aspirin), a lot of it you shouldn't stay on (all of the *ase, combined with aspirin is a huge bleed risk), and most of it has no evidence around it on examine. I think the exercise helped more than your cocktail of woo.
COVID seems to be an endothelial illness, i.e. preventing blood from delivering nutrients and oxygen to cells. Moreover, spike protein seems to act as iron transport inhibitor hepcidin meaning you might end up with a lot of iron outside cells with cells getting into functional anemia. -ases + 100mg aspirin were about trying to break down "microclots" for which I didn't have a direct evidence as no lab was willing to do the test but only indirect evidence from some Australian medical doctor that only started recovering when adding -ases + aspirin + endothelial stuff to his mix.
Please see my comment on the parent -- my lingering symptom was loss of smell, along with some cardio issues. While I haven't tested the cardio side "for real, for real" yet, I'm a couple months in with that concoction and my sense of smell is back to what I remember prior to my covidx2 experience.
Would have been interesting if you had logged your biodata with an Oura ring, or so. I'm planning on doing something like this to get out of a kind of fatigue and sleep problems. I also have a rowing machine, incidentally.
I only tracked data with my smartwatch, my resting HR was basically going down from over 100 to under 60 in 1 month. Oxygen level was 95-99% all the time, but I never got ScvO2/SvO2 measured in the hospital (some say LC folks have only 20-40% SvO2 which is ICU level).
Which watch? They're differing quite a lot in accuracy. Heart rate is mostly fine, but I wouldn't necessarily trust Oxygen or sleep phase tracking. https://www.youtube.com/@TheQuantifiedScientist
It's possible it was a component of that but I never specifically tracked MCAS symptoms. I basically took everything anyone remotely mentioned as helping them or appearing in some medical literature if it was OTC ;-)
You can find most of those quite easily, although I had a bit of a hard time getting my hands on some of those enzymes. Been taking that recipe for a couple months now and my sense of smell has returned to full blast. For reference, I got COVID two times.
Wait.. I'm trying not to get my hopes up but my dad lost his smell for almost 2 years now. The most he's gotten is a single whiff of grass like a few months ago and it made him cry.
Are you saying that if I bought this detoxthespike thing it might help? Obviously nothing is certain, but unless I'm misreading your comment the above link you sent helped with your smell?
I had a few long covid symptoms -- for background, I got covid in early March of 2020, and one of the symptoms I had was complete loss of smell for about a week after, followed by a recovery period that never got me back to 100%. After detoxing with the ingredients in that formula, within a couple weeks my sense of smell is back to what I consider normal, and I feel more clear overall, for lack of a better phrase. I am still taking this formula daily, but more for general health, along with a supplement called Wellness Formula.
I'd say if your Dad is experiencing symptoms around his sense of smell, it wouldn't hurt to try! Most of the ingredients are easy to get online and are great for general health, regardless.
If you grab the ingredients (or a bottle), let me know how it goes! I've been recommending this concoction to people quite a bit lately, and I don't know if it's placebo or what, but it seems to help.
In either case, all the best for you and your father!
> started slowly doing daily rowing machine workouts and within 1 month I was 1000x better.
If your cardio capacity drops enough you get all the same symptoms as long covid. This probably happened to a lot of people from being less active over the pandemic or from getting covid or both.
I managed to bike a year earlier up to 40 miles at a time, but the effect was not lasting, i.e. I had a massive debilitating regression regardless of my will and pain bearing abilities. Only this time as I added so many supplements covering many bases I started experiencing lasting improvement with no major regressions. I also do much less cardio than a 40 mile bike ride, just 30 minutes a day on a rowing machine.
The moment you get it you'll understand why it does exist and its true nature, then good luck! You sound like those doctors in the 70s that thought the ME/CFS is "hysteria" because they thought they conquered all wisdom of the world.
My impression is a 100 years ago doctors would have been comfortable with the idea that their patient was suffering from chronic bad health with no understood cause. And then with the rise of the psychology profession anything like that was deemed psychosomatic. Impotent? Psychosomatic! Gastrointestinal problems? Psychosomatic! Feel crappy with exercise intolerance? Psychosomatic! Over the last 40 years has seen some psychosomatic! problems actually turn out to be diagnosable medical problems.
What are the clinically significant differences between long covid and things like fibromyalgia and chronic fatigue syndrome that have been around for quite a while?
I don't appear to be the only one asking these questions.
i always thought long covid is a variant of ME/CFS - it just got it's own name due to the novel virus, while non-covid cases of CFS are caused by viruses which usually have a far lower chance of causing CFS (epstein-barr/herpes/...). no idea if that's actually the case though.
"A review of long COVID research found half of those affected met diagnostic criteria for ME/CFS."
Post-viral sequelae have been poorly understood for many years.
1. It's hard to tie together the
cause and later effects/symptoms. Did someone get a viral infection? Common cold? Flu? A bacterial infection? People who aren't familiar with this typically have just felt sick, and sometimes the trigger can be a subclinical infection they don't notice.
2. Conventional medicine is bad at acknowledging, researching, and treating chronic conditions. Need an arm chopped off? Thyroid irradiated? No problem, surgery is excellent. Need pills to mask symptoms for years leaving the root cause untreated? Again, modern medicine has you covered. But if yout CBC panels are OK and you just have a malaise, nobody knows what to do.
3. Doctors have a somewhat justified hubris in that if something didn't exist in their med school, it must not exist at all. Sure, people come in with WebMD printouts and can claim all sorts of nonsense, but this leads to kneejerk defensiveness instead of an open mind.
I was infected in 2014 with some unknown, probably viral infection, which cause my thyroid to become inflamed for several months. This can also happen with mono. Anyway, this caused serious, wide ranging effects in my body, specifically causing autoimmunity. I now had serious food sensitivities I never had before.
Not knowing this, I kept eating these foods and after 3 years I was so immensely fatigued and brain fogged and dizzy I could barely walk to the mail box.
After 6 doctors and $20k of diagnostics I finally some solutions. Recovery took years, increasing fast at first and slowing down later. My recovery amounted to cutting out several key foods/drinks out my diet and supplementing for a while to fix deficiencies caused by all this.
My advice if you have this is to be proactive. Nobody will fix this for you. Your doctors probably won't care, so find one that will. I found a doctor that would talk for 1-2 hours in an appointment and go over everything I was learning (yes, she was expensive) Read as much as you can, avoiding the innate human desire to find a magic bullet solution (there is none). Follow up on what your doctor told you and research the snot out of everything you heard.
Long COVID is the first time that cause and effect have been linked and known for so many people. Unfortunately it seems this is exactly what it will take to get taken seriously by the medical profession.
This puts a spotlight on the problem and likely novel findings will come to help answer those who have suffered early on like Howard Bloom and his full recovery after over a decade being housebound.
> My advice if you have this is to be proactive. Nobody will fix this for you.
Still suffering from this myself. I used to train for hours a day nearly every day (BJJ/Calisthenics/KettleBells.) Totally obliterated my exercise capacity after I got Covid twice, first time acute symptoms lasted for 6 weeks, second time was shorter at 3 weeks. Years later and I'm still not the same. It hit hard.
Wile I still push myself in the gym nearly every day, for some reason I'm just not as energetic as I used to be. I'm 33, and was in my 20s when COVID came around. I got vaxed quickly, and have gotten boosters since. I still caught COVID twice. Not fun. Still not the same though, although hitting 30 and beyond might have something to do with it too, as that's the "line" where athletes of all levels usually start to loose a step or a second of reaction time.
The constant brain fog is not cool either. It's like I'm stoned out of my mind sometimes and not able to function properly....but without the relaxation that being stoned brings.
if you're not an elite strength athlete, hitting 30 will not yet have overly negative effects. as an intermediate athlete you might still be able to improve well into your forties.
even elite strength athletes used to hit their peak well into their mid- to late thirties (weightlifting) or even fourties (powerlifting, strongman). same with endurance athletes (in both cases that's not completely true anymore, the best are getting younger and they peak earlier).
> My heart rate has never gone back to where it was and my breathing never returned to being fully "satiating".
> Gone through the gamut of medical tests and everything is "normal".
This, 100% this; and it's a concept that's really hard to get across to people, even doctors.
I got to the point where I decided to start doing stuff again because it was the only way to get back. I'm in way better shape that previously since covid, but that "fully satiating breath" is still not coming.
I don't want to keep spamming a link, but please see my above comment regarding an ingredient list that helped me quite a bit -- I feel like myself again.
There's a popular opinion I've seen on HN that "long Covid" isn't a real phenomenon but it's pretty easy to reject that out of hand. There have been several studies, including a recent quadruple blinded one (where participants, care providers, investigators and outcomes assessors are all blinded to treatment/control groups) that show some interventions have statistically significant benefits to treating it;
It's obviously a real thing, post-viral syndrome/fatigue are well known illnesses and there's every reason to think some percentage of Covid cases would end up similarly.
Long COVID is real, but I bet most people that think they have it don’t.
On the other hand, I doubt long COVID is all that novel compared to what happens with other viruses as well. I think there’s some pushback because the media acts like long COVID is some terribly novel and huge thing, when neither are probably true.
All that said I’m glad more research is happening on this front. We might all get hit by some long term virus consequences over the course of our lives, or perhaps we all live with some constantly.
Agreed. I have a friend who has Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome, which has destroyed her life, turning the most energetic person I knew into someone who cannot walk more than a block a day. Her ME was likely triggered by the H1N1 flu in 2009. It's too early to tell whether this is the same as long COVID, but it is certainly suggestive.
My first thought upon hearing about it was that long covid seemed like a rather general autoimmune disorder. But the researchers all seemed very hesitant to label it as such. Perhaps just because they haven't isolated which antibodies are being elevated, but also perhaps there is a compounding effect from organ damage? The impact of viral loads will some day be viewed as what shaped history and held us back from faster progress.
Researchers who suggest that there is a substantial psychosomatic component to CFS get death threats and have been forced to discontinue their research, so the field is sort of at an impasse because only physical (usually viral) explanations get any play which is fine because CFS is definitely partially caused by post-viral sequelae but you get crucified for suggesting there is a significant psychosomatic component.
Also, millions upon millions of people contracted COVID. Hence a higher number of long-COVID cases. Research into this is a very good thing so.
That the media is over selling it, sure they do. Heck, we had almost two straight days of life coverage of lionesse-turned-out-to-be-a-boar in Germany. At the same time there were elections in Spain, a vote on the justice system in Israel, among other things. Those two alone could have deserved some well researched articles and background pieces. But I digress...
Sure. I also have a young daughter in daycare so I've had a cold about every 2 months for the past year and a half. Obviously those haven't been as bad as the two times I had COVID, but we don't really know if that means long term effects are less likely...and people get a lot of colds.
Good news is, as soon as kids grow out of those childcare and pre-school disease magnet super spreader phase, so do you. The cycle seems to repeat with each child so...
I think long Covid suffers from the same problem as Lyme disease, and also whatever set of real conditions end up explaining chronic fatigue syndrome: the list of symptoms, for a layperson, sound vague enough to attract large numbers of people looking for a concrete explanation for vague but persistent feelings of malaise. Basically the things that an infomercial might invoke: are you tired? foggy? achey? have trouble sleeping? And it's a physical diagnosis with a physical cause.
I remember when I first identified what I was going through as depression and started thinking about getting therapy, someone referred me to an online chronic fatigue syndrome community. I found that it was shockingly rife with open bias against the concept of mental illness. Tons of people with classic depression or anxiety symptoms and no detectable physical problems were railing against doctors who suggested they see a therapist or psychiatrist. Over and over again, in slightly different words, I saw them express variations on the same theme: a mental health diagnosis means you are malingering, stupid, narcissistic, or out to control others by being a burden on them. In their framing, a doctor who suggested seeing a mental health professional was guilty of maliciously lashing out at a patient whose condition threatened their facade of professional omniscience. It was my personal real-world introduction to this kind of stigma, and to this day, I still think about that CFS forum when I look around and wonder what people think about me.
Of course there were kernels of truth there, that some doctors harbor stigma against mental illness themselves, and that such doctors are more likely to suggest mental health treatment when they don't trust or respect a patient, often due to bias. Some of the people on that CFS forum had stories that were pretty damning of their doctors. But many felt that merely raising the topic of mental health was proof of a doctor's bad faith.
Later, when my father was diagnosed with Lyme disease, I read up on it online and noticed the same crowd in the Lyme disease "community." Time had passed, and the stigma was not so openly expressed, but there was the same subset of people with symptoms completely consistent with depression, who were devastated by the suggestion to see a mental health professional and were determined to leave no stone unturned in their search for a more acceptable explanation of what they were experiencing. And of course there were those who saw through the wannabes and leaped to the conclusion that the whole thing was made-up.
With Lyme disease, I felt the sting from both sides: people on one side implying that my depression was just laziness hiding behind a medical facade, and people on the other side denying the reality of a disease my father had. It reminded me that some percentage of people claiming to have CFS had real undiagnosed physical ailments and were probably mortified by their unwilling association with the circus of offensive and/or nutty people who claimed to "advocate" for them. My father certainly had nothing to do with the Lyme conspiracists that demanded a congressional investigation into the theory that the U.S. government invented it as a bioweapon[0], but they're always going to be connected in people's minds.
Luckily, in the case of long Covid, medical science had a head-start. The possibility of long Covid was raised by doctors before it even happened, based on experience with other viruses, and the initial reporting was driven by the medical community as a whole. (The way many people first heard of CFS was thanks to the media savvy of quack doctors selling therapies to desperate people.)
Anyway, that's a longwinded way to say that long Covid will attract its share of self-diagnosing crackpots, but the public perception will hopefully not be affected as much as in the case of CFS or Lyme disease.
> The median age was 45 years (IQR 37–54) and median BMI was 29·8 kg/m2
2) The diagnosis of long COVID-19 was done by survey — this has been shown to be an unreliable method of assessing persistent symptoms of disease. This is in part because people will tell you they have symptoms if you give them a cause and ask. The diversity of the claimed presentation of symptoms is an indicator (e.g. > 50 different symptoms by article-in-support [1])
3) The hazard ratio 95% confidence interval extends to 0.99 when treatment is started within three days. This is not a strong result. 1.0 is no effect.
> > The median age was 45 years (IQR 37–54) and median BMI was 29·8 kg/m2
Not sure what the problem is here? The age seems nicely representative without being too young (deal with COVID better) or too old (deal with COVID worse; and higher liklihood of comorbidities). The BMI is a little high, but then we know that larger people have a higher COVID risk, so maybe this makes sense? Either way, given this is a study of treatment effects, and the BMI was well-balanced between both groups, meaning it's reasonable to assume that it didn't affect the overall findings.
> The hazard ratio 95% confidence interval extends to 0.99 when treatment is started within three days. This is not a strong result. 1.0 is no effect.
The hazard ratio itself is 0.37, which is a pretty strong effect, and the effect is statistically significant. (Also, slight correction: the upper bound of the hazard ratio is 0.95 when treatment is started within three days.)
The issue I mentioned in reply to another comment below is that metformin, the medication they were having success with, is more commonly used as a treatment for type 2 diabetes.
This is partly what I was talking about. Just odd dismissals of actuals scientific evidence.
It's a "major qualifier" that this study looked at middle aged overweight people? Or that they relied on a survey to assess symptoms but then quadruple blinded everyone? They added the long-covid assessment as a secondary endpoint to a group they were studying since before "long Covid" was a phenomenon.
And then to dismiss the result because you apparently misread the CI for the hazard ratio? For those on metformin, it extends to 0.89 not to 0.99 -- and is centered at 0.59 with a P = 1.2%. You can obviosuly quibble about subgroup analysis but for the 3-day group, it's 0.37 [0.15 - 0.95]. That's a fairly strong result!
> This is partly what I was talking about. Just odd dismissals of actuals scientific evidence.
I've read (and heard first-hand) similar approaches by people with a (sometimes hidden) agenda to push. There's a lot of apparently "scientific" stuff out there, written confidently by people who ultimately aren't qualified, which is lapped up by those deep into the confirmation bias of whatever is topic is.
I have all of my running data on Garmin that shows pre and post COVID (at least 3 bouts).
I'm now 90 seconds/km slower, doing the same volume and all other things being equal (except age). My diet hasn't changed, I walk the same distances, climb the same number of stairs, steps per day, weight is the same, etc.
I just cannot get going. Laboured breathing, occasional randomly high heart rate at what would previously have been a LSR (long slow run) pace, where I'd been firmly in zone 3, now randomly hitting zone 5 for bit.
Mostly agree with the other posters here. To add my own anecdotal piece, I had a majority of the 12 symptoms[1][2] defined as long covid. Got covid immediately in Northern Thailand, Dec 2019. Over the next 24 months I went from a healthy (perhaps hyper fit) 40-something male to someone who could barely drag himself to the gym, struggled to complete workouts, went through bouts of mental fog, heart arrythmias, chronic exhaustion, etc. Power outputs were down ~20% on pre- vs. post-covid tracked workouts. Doctors were unsympathetic, prescribed vitamin D for lack of sunlight.
But it's impossible to know if "long covid" is causal vs. ancillary. I'm also 3 years older now, and who knows, maybe that's just part of life and the aging process. I'll say that what helped me the most was just consistently getting out of the house and getting exercise. I started small but it had its own compounding effects. I'm up to about 4 - 5 times per week now. Whether that's walking, running, lifting, or a even a Murph, every bit of exercise seems to have helped me down the (long) road to recovery.
I'll probably never be back to my old fitness level, but things are at least better now. Long covid is as undefinable as it is real, but it can be beat imho. ymmv of course.
Good luck to all who are struggling with this.
I think it's real, I just don't think it's a particular Covid-specific thing. Infections and the immune response to them cause cellular damage, and that damage is different for different people because of a lot of factors - random chance, genetic predisposition, etc. I think this has always been a thing, but it wasn't always as noticeable because this happened to people sporadically as people got 'a cold' or 'the flu' which could have been any number of viruses. Now millions and millions of people have been infected with a fairly nasty coronavirus and the effects of this damage are showing up in large numbers.
Anecdotally, I came down with probably-not-Covid a couple of months back (fit a lot of the symptoms, but never tested positive) and I've only recently gotten my normal energy levels back, and my sense of smell, which disappeared entirely for a few days, is still wonky.
For real? Seems to me like the brain damage and stuff from the infection is pretty simple to understand so that'd be pretty real. From a sorta minimum idea thing that seems like the most solid and easy to understand long-term damage right? Easy to test too, I reckon. Why would people think that isn't real?
Because Long Covid is not a scientific term in the way most people use it.
I've had many family members refer to having long covid because they had a persistent stuffy nose for a few months. Prob virus related to some degree but the looseness of the language makes invites skepticism.
Also some people also love being very vocal about any possible pathology they might have as a political position. Just invites more skepticism.
I'm kind of one of those people. I'm a medical layman and saying "long covid" is kind of a meme/joke. I know it's not real long covid as some people are battling much harsher consequences from having had covid.
But, what I'm trying to say in my layman way is, I feel like I get sick differently after having covid. It's more frequent and lasts way longer. I'm currently at the tail end of a ~4 week long "cold" during which it felt like I'd improve/regress each week and it varied from my being completely functional to having fairly bedridden days. It was all just a "common cold", I think; who knows I might have had covid again (I'm not getting tested each time I get sick any more). These "colds" have been happening roughly every 3-6 months the last couple years since I got covid. Prior to that, I'd get sick only about once a year and sometimes 2-3 times without getting sick. Duration of sickness previously was typically 3-5 days, very rarely ever >1 week. Not sure if it's related, but the time of year is off too. I almost never got sick in the summer months before. Where I live it's been above 100F most of the past several weeks and typically I get sick in shoulder season months (Nov-Dec / Feb-Mar for my locale).
Thanks for the info I haven't come across it as the post I responded to said around here. Just missed the discussions I guess plus I'm kinda new. I understand not liking how a term gets used yeah, creates more misunderstandings and myths. I gotcha.
I had the same question. Apparently people who had already been taking Metformin for diabetes were at lower risk of severe Covid [1], which explains why Metformin is being studied.
Looks like the same authors found that Metformin as a treatment after Covid diagnosis did not significantly reduce the the risk of hospitalization or death, even though it does reduce incidence of long Covid.
Yep - the long Covid endpoint was a secondary one that was added to the trial once people realized that might be an issue. The original trial was to see whether administering metformin / fluvoxamine / ivermectin would have any impact on disease severity.
Spoiler: "None of the three medications that were evaluated prevented the occurrence of hypoxemia, an emergency department visit, hospitalization, or death associated with Covid-19." [https://pubmed.ncbi.nlm.nih.gov/36070710/]
But they already had this population enrolled when Long Covid started becoming an issue, so they extended the study to see what impact the same 3 drugs would have on incidence of long covid.
Unfortunately, COVID has been irrevocably politicized to the point where mere mention of it produces a 100+ comment thread, so any topic that is even remotely related to COVID already has the battle lines drawn and each "side" stands ready to fight over it. It doesn't seem possible to have a un-politically-charged conversation about the reality of Long COVID because it is still not possible to have an uncharged conversation about COVID.
I’ve long been watching ‘physics girl’ on YouTube and what’s happened to her with long Covid is awful. When you hear those stories, you can’t help but think of all those affected.
There is a lack of hard scientific evidence definitively proving this. However you may know in your bones that this is real, from lived experience or from people you know. Please keep that in mind when you dismiss other things that lack definitive scientific evidence. We as humans seem to pick and choose which currently unverified things to believe and which to dismiss.
I cannot comprehend a position of total long COVID denial, though I have encountered it online. Every virus you can think of that causes acute illness, can cause long term or even permanent damage. Sometimes rarely, sometimes often. Even the mildest common cold viruses, can, in very rare cases, be severe enough to cause pneumonia which causes scarring which leads to permanent loss of lung function. Hepatitis A is usually cleared without issue but sometimes significant liver scarring happens. The poxes can be cleared by the immune system but often immense scarring of the affected tissues happens. Viral meningitis...
For COVID to cause severe illness in a few % -- enough to kill in rare cases -- but to not cause permanent lung or heart or kidney damage etc. in some significant percent who got very sick is implausible, even incoherent with all other theories about how viral diseases cause disease.
> For COVID to cause severe illness in a few % -- enough to kill in rare cases -- but to not cause permanent lung or heart or kidney damage etc. in some significant percent who got very sick is implausible, even incoherent with all other theories about how viral diseases cause disease.
So then why do we never talk about long flu? Long meningitis? I don’t think people are in disbelief COVID can cause long term damage to specific people. Obviously that’s a possibility.
I think they don’t believe there is a specific disease called “long COVID”. Call it what it is - be that a damaged lung or heart or kidney. Hell even “post COVID symptomatic disease”. But “long COVID” strongly implies that you have a long, currently present case of COVID. That somehow just doesn’t show up on any tests. After 2 years.
“Lingering effects of influenza”, which I stated obviously can exist. Would you associate the words “long marriage” with “lingering effects of marriage”?
Not a single one of your sources used “long X” terminology. I wonder why that is? Perhaps because “long X” in the English language refers to either a large length or a large duration of time. Not “after effects”.
I suspect the authors of each paper knew this and intentionally made sure not to imply it was a continued disease. But I suppose when something is politicized people find it hard to move on, such as the COVID era.
The thing about a neologism--the one that's relevant here anyway--is that it's neo, and the linear nature of time means that one would not expect to see it in use before it was coined.
With both RSV and influenza, infection as a baby or toddler seems to increase the likelihood of asthma in later life. Do we talk about asthma?
I think it is just so ordinary, an accepted part of life, and often not thought of in terms of being caused by an identifiable pathogen, that it's not really remarkable. Sort of like the fact that viral pneumonia is what kills the very elderly -- if nothing else gets them first -- the older someone is the more likely viral pneumonia will be the cause of death, rising to around half of all deaths in the 90 yo+ demographic. RSV, rhinoviruses, influenza. We're used to it. And short of getting our influenza shots and washing our hands, there's not terribly much we can do about it.
> currently present case of COVID
Well, that's just people abusing terminology. Technically, COVID is not the virus; it's the illness caused by the virus SARS-CoV-2. Same sort of distinction as between HIV/AIDS. A person with severe AIDS who hypothetically was cured of HIV, would still have severe AIDS until/unless they manage to recover some immune function.
It is poorly named I guess. People still mix up AIDS/HIV today and I don't even bother to correct them; can't really blame them for conflating two closely related concepts.
> With both RSV and influenza, infection as a baby or toddler seems to increase the likelihood of asthma in later life. Do we talk about asthma?
I think this reinforces my point succinctly. It’s not “extended RSV” or “persistent influenza”, it’s asthma.
COVID is a completely politicized term and dying on a hill to use it to describe symptoms people are stuck with after recovering from the acute disease, especially in a way that implies they’re still infected, is just - well you can see what it does.
Asthma induced by influenza would be about right, I think.
Much of this is novel, in having the ability to attribute to a specific viral cause, easily and cheaply and widely. This is new ground, new technology. Much of this was until recently, put up to non-specific viral infection, or even idiopathic.
We may start to re-conceive of asthma as different diseases if we could attribute the factors which went into causing a particular person's asthma. Flu-asthma, toxin-asthma, autoimmune-asthma, and COVID-asthma - and hybrid cases.
Those interested in seeing funding devoted towards the study of this would do well do steer away from the political COVID branding. And if that’s too hard, call it “post COVID disease” or something.
That’s not what LongCovid implies, that’s possibly referring to persistent spike proteins but that a separate thing. LongCovid specifically refers to post covid sequelae, as in not a chronic infection but the after effects from an acute infection.
Viral impairments were called ME/CFS, the main difference now is that such a large number of people got it at one time which is making it more difficult to ignore.
99.999% of the population, including those who claim they have long COVID, do not know the words “persistent spike proteins” or “post COVID sequelae”.
Therefore I assert you are incorrect, “long COVID” implies a “long case of COVID”. Similar to how no one would interpret “long marriage” to mean the after-effects of marriage.
P.S. no I will not cite a source for the statistic nor will I cite one for the sky being blue.
We now suspect that many pre-2020 ME/CFS cases were caused by a viral infection, so in some sense it is Long-Flu or Long-RSV, but we just don't call it that.
I myself still have long-term issues from a non-Covid viral infection a few years back, probably RSV.
Exactly, it's the exact same thing under a new branding. Because of that new branding, most people seem to think it's new and unique when it really isn't.
You are absolutely correct. Any infection has the potential to cause serious, long-term problems. Often it is our own immune system going haywire.
I don't think anyone has any problem with that notion. Severe illness is severe.
I think pushback on long covid is when it is similar to antivaxxers claims of vax injuries -- where everything that anyone suffers after the event is lazily traced back to a single source, whether it's "got vaccinated" or "had covid". If someone who had a mild case of covid now attributes every mental state, malaise, physical discomfort, headaches, trouble concentrating, etc, to "long covid", it should properly earn skepticism.
If some small but significant portion of people will be disabled by this then what are we doing going to work, eating in restaurants? What does it mean about me if I stay home working but still get food delivered? Do gas station employees get sick days? If repeated exposure as children risks disability in adulthood then what are we doing sending our kids to school? In a world where being unable to work long-term means deprivation, misery and likely a preventable death? No, it can't be true.
Much more comfortable to believe we wouldn't do this than to confront what it says about us that we have, or what we would have to change to prevent it.
I think it's less "this is bullshit" and more "this is receiving far more attention than long influenza or long any other infection". We've fixated on long COVID to a degree that might not be productive and which - if it has a psychosomatic component in some cases - might be causing more long COVID.
There are about a billion influenza cases every year. This is exactly the attention I'm referring to, where you know a lot about the 750 million COVID cases since 2020 but nothing about the more numerous influenza ones.
> We've fixated on long COVID to a degree that might not be productive and which - if it has a psychosomatic component in some cases - might be causing more long COVID.
Just because science hasn’t proven something or understood it doesn’t mean it’s not real or doesn’t exist.
If we lived solely by this definition there could be a lot of obvious things in the brain that could be canceled.
I understand your point but science is usually playing catch up with covid because it’s been so fast and far out of the gate.
Just because we don’t have the scientific understanding doesn’t mean it doesn’t exist.
In case you’re curious, lots comes out about long covid regularly.
“Gene linked to long COVID found in analysis of thousands of patients
The first genome-wide search for long-COVID risk factors could pave the way for larger studies.”
Following my first infection with COVID, I developed mononucleosis as the infection reactivated the Epstein-Barr virus in my body, which gave me many of these symptoms. I have since found many scientific articles that discuss a link between the Epstein-Barr virus and long COVID. I'm always surprised that the Epstein-Barr virus is rarely talked about in popular news media when long covid is brought up.
I think you mean there's a lack of broad consensus among scientists as to the root cause. There's scientific evidence aplenty. What constitutes as evidence of illness, if not ill people?
Sure, but I think for the bulk of reported long covid symptoms, there is a dispute over whether the cause is more related to post-virus sequelae or perceived infection by covid.
Long covid is likely a combination of both types, but there is evidence that a significant proportion is of the latter form.
>We as humans seem to pick and choose which currently unverified things to believe and which to dismiss
As it was in the beginning and forever will be
It's physically impossible for humans to agree on an "objective truth" because human sense perception (at least with respect to differentiation of truth claims) is not uniform and the variety of human experience - despite variance being relatively small when measured (eg. normally distributed) - is dis-joint enough that insignificant variance in conceptions have historically led to wide scale clan focused war.
For example the theological difference between protestants and catholics is minute when plotted against all other theistic conceptions. Yet that difference is large enough (within those two groups) to drive violent, inter-generational, centuries long conflict.
It's actually pretty interesting when you start paying attention to how groups and subgroups work together or fight respectively in different contexts. I have three kids who will torture each other at home, but they clan up and protect their own or alternatively cooperate, when in social situations with other clans present.
This is an intractable and non-differentiable feature of human society and we want to assume that it's vestigial when in fact it's the core conceptual drive that creates society - for better or worse.
come again? Long Covid has been documented in numerous top scientific journals. My understanding from my scientist friends is quite the opposite. It is well established.
The cause is not well established at all, similarly to CFS/ME. Also similar to CFS, the research has become very politicized and subject to media scrutiny and researchers do not feel comfortable exploring certain research questions around the CFS-likeness of many long covid cases.
There is hard empirical evidence. Plenty of scientific evidence now coming out as well given its been a few years to research initial cohorts. But to wait to verify scientific evidence is just foolish when this is affecting a grand scale of human beings.
Not denying a phenomenon here, so the "Long Covid" moniker doesn't irk me, but I think you hear more "Long Covid" than "Long Flu" because of the lockdowns, masking, school shutdowns, and ongoing culture wars. I also believe the societal measures taken in reaction to Covid has caused a lot of mental anguish and illness that could be part of the "Long Covid" syndrome or phenomenon. Unless a very acute or severe infection was experienced with possible organ or lung damage, I am guessing a lot is the zeitgeist and general malaise of post-Covid modern society.
Thanks for that link. Very interesting. The role of social media in making patients an "epistemic authority" and reversing the normal arrow or flow from doctors and scientists. I like that "long haulers" came from a patient truck driver's cap!
Additionally, mathematics and scientific evidence are no match for the influence of power. The tendency of capital accumulation under capitalism is exceedingly straightforward, but the life of one trying to find peace with that reality is too painful to bear.
>The gold standard to test for viruses lurking in the body is with a gut biopsy, but "it wouldn't be ethical to go around taking out bits of people's guts to have a look," Altmann says. So new ways to test this would need to be worked out.
Isn't this standard procedure for cancer testing? Or is it a more invasive procedure?
If someone's experiencing symptoms as debilitating as the article says, I think they'd be OK with some short term pain in exchange for some forward progress.
> Different patients experience different symptoms from a diverse set of symptoms associated with long Covid, which could mean potential treatments might only relate to a particular sub-group and "one drug or antiviral treatment might be asking too much".
Between the different impacts on different people and the difficulties diagnosing, long Covid could represent an enormous blessing in terms of our scientific understanding of the human body as well as treatments. When your models are shattered, you have to build new ones that explain all the data better.
In the vein of "The Death of Ivan Ilyich", I've come to appreciate life more through illness and suffering. I've also had challenges battling the three horsemen of boredom, loneliness, and helplessness like you would at any nursing home. But I have to say, the way the world has handled this issue was especially discouraging early on.
The medical system felt especially useless (and still feels that way), but it does seem that help is on the way and there's many treatments and funding in the pipeline for the next few years.
Also this is getting plenty of media attention and research is published almost everyday to convince those who think long covid is "all in your head" / psychosomatic.
I will live every day for the rest of my existence with deep empathy to those with unknown/invisible illnesses. For when people treated me like I was "fine" when I told them I was very sick, I felt just like Ivan Ilyich until he met Gerasim. I think we need more Gerasim type people in our lives who can see people suffering and help out knowing that someone will help them when it's their turn.
Long COVID pretty much obliterated the career of a mentor of mine. She went from being a competitive athlete in her late sixties to a home-bound invalid in her early seventies. You know a health condition is grievous when it makes a mathematician give up lecturing.
It has ended dozens if not hundreds of elite athlete careers but also Olympians.
Newspapers and specialty websites are full of these stories over the past few years but the public is either willfully ignorant or feel like denial is some kind of superpower.
Has nothing to do with lack of fitness, anyone can get it.
One big risk factor though to be clear is not the ONLY risk factor is literally genetics so that much is unavoidable.
I think people are dismissive due to the expectation that if it really was that bad they would be hearing much more about it. The idea that something so bad affecting so many people could be largely ignored is incomprehensible to many people. It also didn’t help that ME/CFS was falsely maligned for many decades by horrible scientists in the US and UK.
> I think people are dismissive due to the expectation that if it really was that bad they would be hearing much more about it.
Most people are also still likely to not talk about it and hide it from everyone else.
Makes me worried about when we're going to see a strong 'backlash' against long COVID where people start getting very publicly getting busted for faking it.
If 90% of people hide the condition and try to tough it out and don't talk about it then it increases the public rate of fakers by 10x.
It does appear to be a 'get out of anything' trump card and the fact that it chronic and can wax and wane does mean people can repeatedly reuse the same excuse - I can see why it would be attractive to fakers.
I have lifelong ME/CFS as a comorbidity to my genetic condition hEDS, it got worse in my 20s and then significantly worse post covid vax. I'm a shut-in so it appears that I have thus far avoided catching covid the virus. The pericarditis from the vax was bad enough there were a few times I thought it was going to kill me. There is very little benefit from telling people about it, you almost entirely only get gaslit from doctors and everyone else.
I'm a key man risk on some major projects and if people at work knew I have ME/CFS I would lose my livelihood. I'm not even sure if I could get government disability. When I see homeless people I think; there but for the grace of god go I. I know people in the hEDS community who have been encouraged to do voluntary euthanasia in Canada so that seems to be the new solution to this inconvenient problem. Just recently the first voluntary suicide in South Australia was a young lady with EDS. I manage with the help of a lot of black market / gray market non FDA approved medication and for some possibly related reason I'm freakishly good at programming so a few good days can make up for a lot of bad days.
The combination of people hiding the condition and fakers promoting it means I completely understand why many people think it's fake. It's the doctors that I'm most disappointed in.
A diver at 60? Wow that sounds very arduous, if not just risky. I don't think I'd ever heard of people continuing to do competitive diving into their later years.
>And yet we know perfectly well that there were many people who were vaccinated who did get breakthrough infections and some of those have gone on to get long Covid, but we know that in those breakthrough cases in the vaccinated people, your chance of long Covid is further reduced perhaps by another 50 percent.
As far as I see, they aren't referencing a specific study. But they are clearly making a connection between your long covid chances and vaccination. Does anyone have a link off hand to this data?
i'm interpreting this as: they're making a connection between reduced (but not eliminted) long covid risk after vaccination (compared to a higher risk when not being vaccinated at all).
> The best way to not get long Covid is to not get Covid, and the best way to not get Covid is to be well vaccinated and boosted and have a good level of antibodies to stop the virus getting in.
I know people who got multiple jabs and have had Covid-19 several times already. These suggestions are useless.
> in those breakthrough cases in the vaccinated people, your chance of long Covid is further reduced perhaps by another 50 percent.
If it's reduced by only 50%, with Long Covid being so rare I'd rather take my chances and remain unvaccinated!
Take your chances with what? The vaccine was free for me all 3 times I had it. When I had Covid post-vaccine it was much more mild than when I had it pre-vaccine, though there are several confounding variables present there.
Table 3 and 4 of this UK government information state the number of vaccinations needed in my age/health bracket to prevent a severe hospitalization exceed the number at which we’d expect at least one serious adverse effect — that is, they do more harm than good.
The fact that mRNA based interventions have never before been deployed and as an individual it’s sensible to be cautious about using them until there is long term safety data?
Only if you believe that the risks of mRNA vaccination is higher than the (extra) risk of covid. In my estimation taking the vaccine is the prudent and cautious choice, and the scientific consensus has to be wrong by a large margin for your position to turn out to be more prudent.
If the scientific consensus is contradicting basic system component risk analysis, then yes we unfortunately have to ignore it. I too am deeply disturbed by this.
No, but we do have an enormous amount of data on viruses in general. “The unknown” is limited to the unique attributes of a specific virus, and any common attributes across viruses in general or related-and-well-studied are low risk for producing unexpected long term effects. For mRNA interventions on the other hand, “the unknown” covers the entire mechanism.
> For mRNA interventions on the other hand, “the unknown” covers the entire mechanism.
Why do you think that? mRNA interventions have been researched and tested for a while, this was just the first big real-world application. But that's very different from saying that mRNA interventions haven't been well-studied. You'll have to provide actual research comparing long-term dangers of viruses with existing long-term mRNA tests to make this claim and convince anyone.
Personally, having been led on wild goose chases by the medical system before in life led me to also be wary of any magic solution with no long term testing.
Pretty much everything has side effects - even the most safe drug or supplement has tradeoffs. For example, taking PPIs which are very safe will cause malabsorption of B12 over time leading to various health issues.
The risk from being vaccinated against covid isn't "you feel like shit for a day". That's not a worry for most people.
Is injecting a person with mRNA that makes them produce a particularly nasty spike protein zero risk? No. Is this spike protein one of those? Does it end up where it shouldn't?
In 2023 that information is not available. Not true or false, but simply unavailable.
> Is injecting a person with mRNA that makes them produce a particularly nasty spike protein zero risk? No. Is this spike protein one of those? Does it end up where it shouldn't?
Aren't you getting the same spike protein when you're infected by COVID, which is more likely if you're not vaccinated? That would mean the vaccinations reduce your exposure to the spike protein.
> Aren't you getting the same spike protein when you're infected by COVID
That's the entire goal. But is it the same spike protein? Does it end up in the same tissues as COVID? Does the mRNA delivery & creation vector matter?
I rolled the dice and got triple-vaxxed, on the assumption that I'm better off than getting covid with a naive immune system, but I wasn't under any illusions that it's anything but a some-unknown-%-loaded-in-my-favor dice roll.
There wasn't enough time to wait years and see what the outcomes are, and also most people on the planet were guaranteed to get covid soon anyway.
> Does it end up in the same tissues as COVID? Does the mRNA delivery & creation vector matter?
I haven't seen any evidence for different tissue, or effects due to mRNA delivery & creation. Given how big the anti-COVID-vax movement and industry is I feel fairly sure that any such issues would have been found by now.
> I rolled the dice and got triple-vaxxed, on the assumption that I'm better off than getting covid with a naive immune system, but I wasn't under any illusions that it's anything but a some-unknown-%-loaded-in-my-favor dice roll.
> There wasn't enough time to wait years and see what the outcomes are, and also most people on the planet were guaranteed to get covid soon anyway.
I think this is a fair way of putting it, but at the same time it feels like the potential criticisms towards the vaccines always far outweigh any such criticisms towards COVID itself.
I'm not perfect, so I qualify my statements. What is your issue with that? Would you like it better if I pretended that I know everything with 100% certainty?
I think you're misunderstanding me. I'm not arguing that we shouldn't do further research in mRNA interventions, or that it's perfectly understood. I'm arguing that we also don't understand COVID well, and that we should use similar levels of care for both, instead of treating COVID as fully understood and only looking at mRNA with a healthy dose of scepticism.
Is injecting people with mRNA via lipid nanoparticles to prompt their bodies to produce Covid spike protein less risky than Covid?
I don't think in 2023 that question is answerable. It's not a "yes" or "no" right now, although I've erred on the side of "yes" until proven otherwise.
COVID was feared to mutate into something dangerous and that's why we took it so seriously. The Spanish Flu started out similarly innocuously and then turned into something terrible. That's what we were trying to (and succeeded at being able to) avoid.
The main point that was pushed, however, was that health infrastructure simply could not handle Covid, and that without suppressing its transmission, many more would have died.
The BBC isn’t typically considered right-wing garbage, except perhaps to consumers of extremely left-wing garbage. I promise you that while it may have been talked about, it was never the main or even a major part of the story*. The comment I’m replying to (yours I guess from the attempted burn) implies heavily that it was the agreed-upon and media-promoted main strategy, which is an obvious falsehood, hence the downvotes that comment received. Maybe you think this site is all right-wing too? (Not untrue tbh, depends on the issue at hand.)
I am sceptic to long covid since I dont believe in big pharma good intentions. Years have passed since one pharma company knowingly sold infected drugs to 3rd world countries [1], but the nature of human didn't change. Big companies are run by people with black triad personality traits and who are incredibly greedy
2. If Covid was created in a lab, this de-facto means that Covid has potential as a biological weapon. I don't see how this could be framed any other way. Even if researching novel viruses is in good faith, it doesn't eliminate the reality that they will always have inherit value as biological weapons.
3. Can someone explain to me why there isn't an extremely aggressive campaign to pin down:
a. Where it came from
b. All parties involved in it's funding and creating
c. Passing laws and sanctions to eliminate further continuation of said research. If it was done by China, then they should publicly be held accountable and action should be taken until that is done by all countries.
In this line of assuming Covid was created in a lab, it was one of the most devastating events to the human race in recent history. Many people died and many more people will likely suffer from effects of long covid. It completely warped the global economy.
Is there no attempt at pinning this down and holding people accountable because it can't be proven that it was lab created 100%?
There's a million lesser events every single day that seemingly get more time, money, and energy spent on holding people accountable for infinitely smaller mistakes, accidents, and wrong doings.
> If Covid was created in a lab, this de-facto means that Covid is a biological weapon.
That's not even remotely true. I agree that lab-leak is something like 60-70% likely, but even the lab-leakers are in unanimous agreement that it was an accidental release of GoF research, not a biological weapon. However poorly justified this research was, it's not the same thing as a bioweapon agent.
> Can someone explain to me why there isn't an extremely aggressive campaign to pin down: a. Where it came from b. All parties involved in it's funding and creating c. Passing laws and sanctions to eliminate further continuation of said research.
Because this would make China really, really angry, and for better or worse, that's considered not an acceptable cost for the benefit. But note that, very quietly, there have been some tacit admissions that lab leak is probably real. The Biden administration recently cut all funding to the WIV, for instance, which I don't think can be read any other way, so you actually are getting the c) you asked for. I think in the long run GoF research is very much on the chopping block as well; that seems to be the way the discourse is trending.
No. There has not been more evidence that Covid was lab created.
Republicans who already support conspiracy theorists suggest that because China did what china always does (suppress information), it must be a lab leak. The fact that china is suppressing information on Covid does not lend credibility to the conspiracy hypothesis. Suppressing information has been a Chinese government position for decades leading up to Covid and is not out of the ordinary behavior, so cannot be used as evidence that something is awry.
The next bit of evidence that people who already support the lab leak conspiracy state is that “ventilation was being upgraded”. Which. Okay? I mean. Is it credible that a chinese lab was not sufficiently scrubbed for ventilation workers? I have no answer, but it also doesn’t explain why the virus appears to have jumped multiple times in a somewhat short period at the wuhan markets.
All things considered, it is possible that the virus leaked from the lab. But even if that were the case, it doesn’t lend any credibility to the conspiracy, which makes some pretty radical claims (that it was intentionally leaked, that Pfizer paid for the leak, that it was a leftist plot to destroy half the population for some reason, that it was a precursor to injecting people with 5g nanobots, etc)
Even if the conspiracy group accidentally landed on the correct place that the virus originated (and that’s suspect. The evidence is conspiracy oriented itself), it doesn’t lend any credibility to it being a plot to kill everyone with a killer vaccine.
I haven't downvoted, but origins is off-topic from this thread, so the downvotes it appears you're in the course of receiving will only serve to stigmatize that topic in the HN commentariat context. If you're looking for leads into
l̶a̶c̶k̶ o̶f̶ origins investigations, recommend browsing through US Right to Know, and the House Select subcomittee on coronavirus origins - link (partisan, unfortunately) https://www.twitter.com/covidselect
Disclaimer: I help with BiosafetyNow (which is also another source for content, advocacy & activism on the topic).
No, there is little evidence suggesting it was created in a lab. There is evidence that it may have "leaked" from a lab that studies coronaviruses, but that doesn't mean it was engineered. The leading lab leak theory states that it could have been a sample collected from the wild, e.g. a bat colony, that was taken to the lab, and then someone at the lab was exposed.
US intelligence agencies have clearly stated that they do not believe that SARS-CoV2 was created by the Chinese government and that it should not be considered a biological weapon. While I understand why people doubt US intelligence sometimes, I can't see what incentive they would have to go easy on China in this case.
I also have no idea how you intend to hold a sovereign nation, let alone a borderline superpower, accountable for something that can't even be proved.
There's not lot of evidence of that. There's lots of evidence (including at first a massive coverup, with the help of complicit media -- media who now changed their tune) that it leaked from a lab.
If it leaked from a lab (which now many officials, including US officials, says is the most likely possibility: so now there's a >50% chance that it was a lab leak according to officials [0]), the other question that remains is: is it an unmodified sample that leaked or one on which GoF research had already been applied?
[0] which is quite funny because if you dared to say so when the outbreak happened, you were labelled a conspiracy theorist just as crazy as those believing the world is run by lizards taking human forms
And no, even if it were created as part of vaccine or coronavirus research, that would not equate to it being a biological weapon. That's an absolutely unjustified leap. Do you know how virus research works? Clearly not. They still have smallpox viruses sitting around in labs. I don't know if there is any active research related to improving the smallpox vaccine, but if there were, and there were a release, in what way could you possibly classify vaccines as biological weapons?
But back to the original point: WHY? There is ample evidence that this particular lab had lax safety protocols that might have resulted in a leak of the virus. There is also evidence that similar viruses existed in the wild animal population of the area. They may or may not have been studying one of those viruses in the lab, but that alone doesn't prove where it first infected a human.
But say you have incontrovertible proof. What does that change?
People who died will remain dead. People with long COVID will remain ill. We can rattle sabers at China, but they're likely to continue to deny it was their fault. So what does happen? We can extrapolate from the past:
1. People of Chinese (or any east Asian) ancestry will be treated badly or even killed in twisted "revenge" fantasies of various idiots around the world.
2. The saber rattling could escalate to actual hot war, and more people would die.
3. Say I'm wrong and China does admit the lab screwed up. What then? They'll fire and/or execute people who were responsible. And...? It's not like they're going to pay compensation to everyone who lost a loved one around the world. They'll perform some political theater, and after a news cycle it will fade away.
I don't see an upside unless you're hoping for #3 and think that killing or jailing a few more people will somehow even the scales? Killing or jailing people for incompetence seems cruel and unusual to me. Never attribute to malice that which is adequately explained by stupidity.
Then one day I got finally upset by my deteriorating state, started taking about 50 different supplements with any "word-of-mouth" evidence from Reddit forums from folks claiming it helped them, started slowly doing daily rowing machine workouts and within 1 month I was 1000x better.
I really think medical science gets many things wrong and knows only a small piece of puzzle on how the human body works, and people with long covid are stuck in that knowledge gap.