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The burden of Long Covid “so large as to be unfathomable”

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201–210 of 234 posts

Re: The burden of Long Covid “so large as to be unfathomable”

#201

Earlier quoted context omitted.

We don't have long term safety data on any covid variant either...

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.

Re: The burden of Long Covid “so large as to be unfathomable”

#202
post #10

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; https://w…

I think there are a couple of things going on: 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 o…

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.

[0] It happened in early 2019: https://www.vice.com/en/article/neaxdq/the-conspiracy-theory...

Re: The burden of Long Covid “so large as to be unfathomable”

#203

Earlier quoted context omitted.

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.

Re: The burden of Long Covid “so large as to be unfathomable”

#204
post #190

Earlier quoted context omitted.

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…

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…

> 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?

Re: The burden of Long Covid “so large as to be unfathomable”

#205

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 b…

>I really think medical science gets many things wrong and knows only a small piece of puzzle That's certainly true, but medical science is well aware of the incredible benefits of physical exercise and the power of placebo.

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.

Re: The burden of Long Covid “so large as to be unfathomable”

#206

Earlier quoted context omitted.

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. Sti…

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…

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.

Re: The burden of Long Covid “so large as to be unfathomable”

#207

Earlier quoted context omitted.

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…

> 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,…

"It's in your head" is typically not meant politely and not a sober sign of resignation, rather accusation of simulating the illness.

Re: The burden of Long Covid “so large as to be unfathomable”

#208

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 b…

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Re: The burden of Long Covid “so large as to be unfathomable”

#209
post #72

Earlier quoted context omitted.

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.

> "this is receiving far more attention than long influenza or long any other infection" Yeah, because a loooot of people have caught COVID in the past three years, lol. There was a whole pandemic about it.

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.

Re: The burden of Long Covid “so large as to be unfathomable”

#210
post #182

Earlier quoted context omitted.

> 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-unkno…

> But is it the same spike protein? 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-vaxxe…

> As far as I'm aware

> I haven't seen any evidence

> I feel fairly sure

> it feels like

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