The burden of Long Covid “so large as to be unfathomable”
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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.
My dad lost his smell sadly
https://news.ycombinator.com/item?id=36862855#36865016
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.
See:
https://xdrx.substack.com/p/how-i-recovered-from-long-covid-...
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.
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'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!
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.
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".
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.
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.
Any nutrient you take to excess will be downregulated by one of these thousands of processes shown here: https://external-preview.redd.it/Yepk20IXyppuST6erisGCPg716V...
That's certainly true, but medical science is well aware of the incredible benefits of physical exercise and the power of placebo.
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?
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.
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?
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.
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.
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!
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.
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.
perhaps?
Asking because "take a multivitamin" and "exercise daily" seem to be very standard pieces of medical advice. "Take 50 specific supplements", not so much.
https://xdrx.substack.com/p/how-i-recovered-from-long-covid-...
This could help your scientific brain a bit ;-)
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.
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.
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 don't appear to be the only one asking these questions.
https://www.jwatch.org/na56219/2023/06/15/long-covid-and-chr...
https://www.publichealth.columbia.edu/news/long-covid-really...
"A review of long COVID research found half of those affected met diagnostic criteria for ME/CFS."
"Conclusions: Our study shows higher levels of neuroticism in patients with post-COVID syndrome. "
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.
> My advice if you have this is to be proactive. Nobody will fix this for you.
100%.
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.
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).
https://www.thelancet.com/journals/laninf/article/PIIS1473-3...
It's obviously a real thing, post-viral syndrome/fatigue are well known illnesses and there's every reason to think some percentage of Covid cases would end up similarly.
Looks like the same authors found that Metformin as a treatment after Covid diagnosis did not significantly reduce the the risk of hospitalization or death, even though it does reduce incidence of long Covid.
[1] https://www.covid19treatmentguidelines.nih.gov/therapies/mis...
https://clinicaltrials.gov/study/NCT04510194?term=NCT0451019...
Spoiler: "None of the three medications that were evaluated prevented the occurrence of hypoxemia, an emergency department visit, hospitalization, or death associated with Covid-19." [https://pubmed.ncbi.nlm.nih.gov/36070710/]
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.
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.
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...
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.
[0] It happened in early 2019: https://www.vice.com/en/article/neaxdq/the-conspiracy-theory...
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.
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).
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.
1) The ages and BMI:
> 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.
[1] https://www.medicalnewstoday.com/articles/symptom-burden-sur...
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!
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.
You cannot extrapolate from a median of obesity into the general population.
This is especially true when the medication you are having success with (metformin) is a treatment for diabetes.
What are they even measuring?
> > 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.)
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.
[1] https://www.nih.gov/news-events/nih-research-matters/toward-...
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.
Wow, she's got an awesome set of true friends, really heartening to see that support and love surrounding her. Amazing.
Long covid is likely a combination of both types, but there is evidence that a significant proportion is of the latter form.
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.
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.
We are living life. Driving your car is doing much more damage to your fellow man than someone eating at a restaurant.
Mask is underrated. Everybody wanted to get rid of it. But why.
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.
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.
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.
https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/...
Emphasis on “Continue or develop”.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2826837/ https://pubmed.ncbi.nlm.nih.gov/34694344/
> Long meningitis?
https://pubmed.ncbi.nlm.nih.gov/27105658/ https://www.sciencedirect.com/science/article/abs/pii/S01634...
Just because you haven't seen it doesn't mean it doesn't exist.
> Lingering prenatal effects
So not “long influenza”.
“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.
I myself still have long-term issues from a non-Covid viral infection a few years back, probably RSV.
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.
Anyway. A popsci article from 2018: https://www.cnn.com/2018/12/31/health/flu-body-effects-partn... And if you want to dive in to it, the relevant search terms are: influenza pulmonary fibrosis
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.
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.
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.
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.
If I were you I would try to examine why false beliefs are being accepted into my model of the world.
Very charitable phrasing.
Yeah, because a loooot of people have caught COVID in the past three years, lol. There was a whole pandemic about it.
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.”
https://www.nature.com/articles/d41586-023-02269-2
“‘Brain fog’ of long Covid comparable to ageing 10 years, study finds Symptoms of infection can last two years”
https://www.theguardian.com/world/2023/jul/21/long-covid-bra...
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.
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.
While I did suffer from LC(and probably still will if it relapses), I can also see the silver linings.
https://jondouglas.dev/long-covid/
In the vein of "The Death of Ivan Ilyich", I've come to appreciate life more through illness and suffering. I've also had challenges battling the three horsemen of boredom, loneliness, and helplessness like you would at any nursing home. But I have to say, the way the world has handled this issue was especially discouraging early on.
The medical system felt especially useless (and still feels that way), but it does seem that help is on the way and there's many treatments and funding in the pipeline for the next few years.
Also this is getting plenty of media attention and research is published almost everyday to convince those who think long covid is "all in your head" / psychosomatic.
I will live every day for the rest of my existence with deep empathy to those with unknown/invisible illnesses. For when people treated me like I was "fine" when I told them I was very sick, I felt just like Ivan Ilyich until he met Gerasim. I think we need more Gerasim type people in our lives who can see people suffering and help out knowing that someone will help them when it's their turn.
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.
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.
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.
Close to a "brain fog" I guess.
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 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!
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.
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.
That wasn't the question. The question was whether it's more 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.
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.
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.
As far as I'm aware, yes.
> 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 haven't seen any evidence
> I feel fairly sure
> it feels like
Absolutely none of our base assumptions related to these mRNA vaccines don't require extreme scrutiny. It's not tinfoil-hat territory to say so.
https://assets.publishing.service.gov.uk/government/uploads/...
To me it sounds like long Covid is just a series of various ailments caused by various reasons but all blamed on Covid.
[1]: https://en.wikipedia.org/wiki/Long_COVID#/media/File:Long-te...
[1] https://www.theguardian.com/world/2003/may/23/aids.suzannego...
That doesn't make any sense.
1. Covid created in a lab (not proven, but high enough probability to be considered a reasonable option):
https://oversight.house.gov/release/covid-origins-hearing-wr...
2. If Covid was created in a lab, this de-facto means that Covid has potential as a biological weapon. I don't see how this could be framed any other way. Even if researching novel viruses is in good faith, it doesn't eliminate the reality that they will always have inherit value as biological weapons.
3. Can someone explain to me why there isn't an extremely aggressive campaign to pin down: a. Where it came from b. All parties involved in it's funding and creating c. Passing laws and sanctions to eliminate further continuation of said research. If it was done by China, then they should publicly be held accountable and action should be taken until that is done by all countries.
In this line of assuming Covid was created in a lab, it was one of the most devastating events to the human race in recent history. Many people died and many more people will likely suffer from effects of long covid. It completely warped the global economy.
Is there no attempt at pinning this down and holding people accountable because it can't be proven that it was lab created 100%?
There's a million lesser events every single day that seemingly get more time, money, and energy spent on holding people accountable for infinitely smaller mistakes, accidents, and wrong doings.
2. Virologists have legitimate reasons for wanting to study more dangerous forms of viruses before they appear in the wild.
3. China.
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.
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.
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.
Disclaimer: I help with BiosafetyNow (which is also another source for content, advocacy & activism on the topic).
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.
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