I had an odd interaction with my doctor recently re: long Covid: he feels that we won't be talking about it much in 10 years, and I got the impression he felt it's not a "real" thing. Some points he brought up: (1) historically these sorts of reported effects often happen after an outbreak, and they taper off after some years, even though the original disease is still around and (2) it's mainly reported in women and young people, who are not the ones most susceptible to the original disease.
I brought up that it seemed reminiscent of Chronic Lyme's disease, and he said that yes, that's also a very questionable diagnosis.
I didn't really get into the weeds of that discussion, but it kinda put me off, since I have had several friends over the years who have had a hard time convincing the medical establishment that they have a real condition. Things like Chronic Fatigue, Ehlers-Danlos, Lyme's as mentioned, etc.
There's this historical view that since it is mainly self-diagnosed women affected by all these, it's just a case of "women complaining" or somesuch (maybe not stated so directly) and not a real condition or mostly psychological.
It gets dismissed, so it gets less research. Since it gets less research, doctors can say "there's not strong evidence to support it," and so the cycle continues. There's some sexism (and other -isms) inherent in the system, I do believe.
It's entirely possible that women, for biological reasons, could be more susceptible to these system-wide hard-to-pin-down chronic issues. I really don't know; I wish there was more research being done.
But it was just a weird moment where I got to witness that dismissiveness firsthand, from someone who otherwise I generally respect.
The impression I've gotten from the reading I've done on these sorts of conditions is that part of the reason doctors are reluctant to do research is because it such a fraught area that anyone who engages with it are targeted by groups of sufferers. Even researchers who favour a biological cause can be subject to unwelcome attention and harassment.
These sufferers are not all, and probably not even most, of the total, but they are organised and militant, and fully convinced of two things: That their condition has a 100% biological cause, and that they cannot trust the medical and scientific establishment. Even if they are completely right, it has created a situation where the cost of getting involved as a medical professional are just too high, so it has become a self-perpetuating situation.
Unfortunately, it's this kind of dismissiveness that's driving people to the likes of RFK Jr. When people don't feel like they're being listened to they'll go out in search of all manner of remedies proven or not. They want answers and often the answer should be "we don't know" along with acknowledging that a patient's experience is valid and should not be ignored. The problem in our healthcare system is that digging deeply into the causes of someone's disease isn't monetarily feasible because insurance companies refuse to cover such deep investigations in most cases. So we have cookie-cutter medicine driven by insurance companies - if you don't fit into a particular standardized bin there's not much help for you. It's often up to the patient to "do their own research" and that has very mixed results.
Disclaimer: I know very little about long covid, so speaking more generally here. I’m also not a doctor.
While that is indeed a logical fallacy, doctors are in the business of evidence-based care. How could a doctor responsibly recommend a course of treatment for something which has little evidence, as something unproven would have. Many treatments have both positive and negative effects, and a doctor would typically only recommend a treatment when the good outweighs the bad. On the flip side, there many unproven or proven ineffective treatments patients frequently self-prescribe/self-administer which a doctor would let slide on the basis of it also being harmless. After all, the placebo effect is powerful in and of itself. Taking a wholistic view, medicine is about maximizing the quality of life for patients, as opposed to just being about curing everything. It’s not clear to me how a doctor could responsibly recommend any treatment with potential downsides to a patient with an unproven diagnosis. Such a treatment might indeed help the patient, but it’s a risk/reward tradeoff that needs to be balanced, and while the patient should absolutely be involved in deciding where to draw the line, the vast majority are simply not knowledgeable enough to accurately assess the situation.
The problem is some doctors think they know more than do. You are ill. You go to the doctor. They run tests. The tests come back negative (ie no evidence of illness). The doctor insists you are not ill. But you know you are.
But... new tests are being developed all the time. Maybe in 5 years a test will find that you are ill.
But for the 5 years up to that point the doctor will insist you are not ill.
A better logical position for the doctor would be "you may be ill, but we can't figure out what it is".
"There's no evidence of that" often means that there's no money to be made in studying that thing: or, alternatively, that there's a lot of money being made and nobody wants to look for inconvenient answers.
Yeah... I tested positive for Babesia, and took the pills to treat it (the same ones are used to treat malaria). And it went fine and now I test negative.
But as I went online to see what other people's experiences were, I found a number of people who were like "I've decided to self-treat this infectious (and potentially deadly) infection with 11 herbs and spices." I can see how people get driven to do that, but it's still tragic.
In https://medicalxpress.com/news/2024-07-covid-puzzle-pieces-f... the author says: "The intense scientific effort that long COVID sparked has resulted in more than 24,000 scientific publications, making it the most researched health condition in any four years of recorded human history."
Conveniently he provides the search term used to produce the "24,000" figure:
It's not only "long-lyme" patients who have been ignored or downplayed, but also many "long-covid" patients from the other four endemic coronaviruses, who have been reporting these symptoms for _decades_ now.
If you want to be a little shocked, try a scholarly publications search for "{hku1|oc43|nl64} cardiovascular", with a pre-2020 filter. You'll be amazed. 229e seems to have less research in this area, but it seems very likely that all five coronaviruses have this effect.
I think that the hype surrounding covid-19, for all its problems, has helped to elevate the reality of post-infection syndromes. I just hope that actual care is the long-term result, rather than more profit-seeking and power grabs over one single pathogen.
Took a family members years to get their Lyme diagnosed, and energy levels never fully recovered. Really scary how easily people can get permanently damaged.
I think it's amazing that humans aren't seriously and permanently damaged way more often than we are. It seems like it's incredibly hard to keep anything complex working for just a couple years and humans regularly manage that for 25x or more of largely healthy, active adult life and then have a decade or two of lesser health, but overall it's amazing how well we work.
Mental illness is complicated and it can create real physiological symptoms. Someone with extreme anxiety will feel heart palpitations, fatigue, and a bunch of other symptoms despite the cause not being an actual underlying disease.
Is it always the case that there's no underlying disease? No, but is it often the case? Maybe?
Those that make it part of their identity and reinforce it make it worse.
I don't know what's going on here, but if I had to place a bet it's on the side of skepticism wrt 'long covid' in most cases.
I have two friends with Myalgic Encephalomyelitis (aka chronic fatigue) at life-ruining levels, likely from the 2009 swine flu. To very mentally healthy women both before and after, and physically very healthy before.
As someone who has a chronic illness myself, I think it's absolutely important to consider anxiety as a potential source. I'd much prefer if meditation or therapy would fix my health issues rather than something more expensive/annoying/side-effecting.
My complaint is that "this is caused by anxiety" is treated as an assumption, rather than as a potential cause to be investigated. Moreover, I've seen doctors use anxiety as a way to write-off and dismiss a patient ("it's all in your head" shouldn't be dismissive; it's still something that needs to be treated).
Sometimes a doctor might say, "why don't you try exercising three times a week for three weeks and tell me if that makes a difference," to test if that makes a difference. But I've never heard a doctor say "try meditating every day and then we'll see if that will stop your fainting episodes."
All that is to say, I wish doctors viewed anxiety as a cause to be investigated, rather than a dead end that they can use to ignore a patient.
Yeah I generally agree with that. The anxiety example comes from personal experience for me where I thought I was having some medical problem which ended up ultimately being fairly extreme anxiety. Learning how to cope with that was a form of treatment the medical system is ill-equipped to handle, but in my case had I gone down the path of "this is definitely a non-anxiety related illness" I would have been much worse off.
It's still genuinely hard for me to personally tell the difference and sometimes I think something is anxiety when it ends up being an actual virus (or the opposite).
Yeah it's tricky; I imagine it's a mix of things going on. Suppose 80% of cases are fake. If we see that, and dismiss the whole thing as a result, that leaves the 20% of real cases ignored/dismissed. That could still be a lot of people who we are now wrongly telling it's all in their mind.
It's also because there is a stigma around mental reasons. "Hypochondria", "Hysteria", "Psychosomatic" ... all these words have negative connotations, even though the mind/body connection is a real thing.
Would be a fascinating study to have Long Covid patients drop LSD and see for effects.
I mean, hypochondria is definitely not a good thing, tbf! And psychosomatic illnesses are qualitatively different from physical ones, in terms of diagnosis and treatment. Hopefully all doctors are on board with the whole “you can’t just snap yourself out of mental illness” thing by now, but that’s perhaps a bit naive…
people rarely snap themselves out, but they can dig themselves out. It usually boils down to the same recommendations of sleep, diet, exercise, and confronting issues. Sometimes medicine or therapy can help.
Sexism and racism are absolutely rampant when it comes to dismissing people’s medical concerns, you’re totally on track there. It’s not “I hate them and want them to suffer” prejudice, it’s “well that group of people tends to be less smart so they’re probably faking on accident” prejudice.
That said, as a harsh skeptic of long covid: does the author present any evidence? Or just “I’ve been tired a lot, and I feel like I wasn’t before”? Sadly the article itself is paywalled for me.
More scientifically, what is long covid? Is that how viruses work? I guess the idea is that the virus is hiding out somewhere in the body where the immune system and doctors can’t find it…?
> More scientifically, what is long covid? Is that how viruses work? I guess the idea is that the virus is hiding out somewhere in the body where the immune system and doctors can’t find it…?
This is a big open question. Viruses absolutely can hang around for decades with the immune system unable to remove it (see for example shingles). It could also be damage done during infection that the body just isn't fully able to repair. Or it could be phycological (we can't rule it out), or some other not yet understood mechanism.
I'm not a doctor but I know there are many widely accepted diseases that there's little understanding of and limited treatment for. MS for example; there's a basic idea of how it works, but it's almost random in how it presents and how it can be treated, and it's incurable.
My brother has been suffering ever since his first or second encounter with COVID, I forget which.
His resting heart rate was very elevated from before he got sick, and recovery rate quadrupled. Just walking up a flight of stairs or two would require him to sit down, winded, to recover.
After all sorts of fitness tests, heart monitoring, lung tests, etc, the best guess the doctors could come up with was nerve damage from the infection or subsequent inflammation.
He's gotten covid 4 times total now. I don't think there's any way to tell if he's just unlucky in getting exposed to it or if there is some mechanism that lets it hide in the body, though I suspect he's just unlucky.
Fibromyalgia is another one. Predominantly diagnosed or reported in women, though I (a male) got it from my mother (if it is even hereditary, otherwise just bad luck).
I wouldn't be surprised if many of these chronic symptoms boil down to nerve damage from either infections or the subsequent inflammation.
My brother's got pretty bad long COVID symptoms, but there's nothing physically wrong that doctors can find despite running every test under the sun related to his lungs and heart. Again, best guess is some sort of nerve damage causing the symptoms.
There is a book The Deep Places: A Memoir of Illness and Discovery by a New York Times columnist, about his Chronic Lyme's disease. And how he increasingly checks out alternative medicine when establishment medicine has nothing to offer.
This is always a tough conversation. Yes, people will be wrong to dismiss patients. The danger is that you can also be wrong to accept patients.
It sucks, as you never know where in the distribution you are. If there is indeed a social contagion vector, are you in that social contagion, or do you have a specific thing? How would you know?
Chronic Lyme's disease is an odd example to bring up. It is fairly accepted that a large portion of the people that have it never had Lyme's disease? Do you dispute that take? (Legitimate question.)
If there are specific tests that are being denied on this, I'm game for doing more tests. I don't know why some people (doctors and otherwise) are opposed to some things. That said, I'm also not sure I agree that we should open the floodgates to questionable treatments. (And I have to acknowledge that testing isn't automatically an answer. Base rates and recall are real things.)
To put yourself in the doctor's shoes, how many times have they had people push for them possibly having some obscure thing that they turn out to not have. And you are close to dismissing the doctor without knowing any more about why they have their opinion.
> Do you dispute that take? (Legitimate question.)
I don't have much knowledge one way or the other. I have no reason to doubt you though (:
My main direct experience is with someone who did have normal Lyme's, and then also had chronic health issues afterwards. Maybe today that would be called "Post-treatment Lyme disease syndrome," though this was decades ago and the terminology was not so specific (as I recall, at least).
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Agreed w/regard to the difficult position doctors are in. They don't want their resources to be abused. But then if the 1% (or whatever) genuine person who needs it comes through, they might get wrongly turned away. Sucks all around!
I'd be surprised if your friend had too much resistance if they were documented as having been treated for Lyme's disease. Not shocked, sadly; but surprised.
Also, I think it is more than just abusing the resources of the doctors. Without perfect knowledge of what you are looking at, studies have shown that more testing can lead to more procedures without necessarily increasing conditions. Look into xrays and back pains. Noting that my knowledge may be out of date, but my understanding is that xrays do not help people recover from back pain. They do lead to patients getting more surgeries, though.
Even this story, how many of the tests and treatments that this person has gone through were useful? It sucks, because I don't think we want to shame people for searching for answers. I do think tracking every pain that you feel could oddly lead you to feeling more pain, though. Look into how focusing on tinnitus makes it worse.
Which is to say, doctors probably get more success than we want to consider by telling people to hang in there and keep trying. We can call it reverting to the mean experience, and that probably is accurate enough. But it greatly complicates this situation.
How far are we in detecting / localizing mitochondrial dysfunctions? IIRC aside from inflammation that was a potentially common factor between Long Covid, CFS, Lyme etc
> I brought up that it seemed reminiscent of Chronic Lyme's disease, and he said that yes, that's also a very questionable diagnosis.
I live in New Hampshire, the people I know who got lyme and say its chronic/it ruined their life are all vegan, and one vegetarian. The people who are not called it a bad week. I suspect diets (specifically diets of deficiencies) play a somewhat tragic role in a lot of these patients.
Diet is the first thing to look at with a chronic illness. Dairy, Gluten etc. I know people who suffered for years before changing their diets and recovering.
> In basically every case, the initial group that claimed to have it and the main promoters of it have been young females. Thus, some skepticism is justified. Women are generally more prone to social contagion.
I think the most useful question isn't whether women are more prone to contagion. It's whether more women would be saved by a doctor's skepticism of their symptoms, or whether more women would be denied proper treatment by it.
Your question is a good one, and I think it depends on a number of factors. My two cents as a nonpracticing woman (which is my tongue-in-cheek way of saying that my parents raised me as one but my beliefs have since changed):
People talk about the ways that doctors dismiss women's symptoms, but I've found that a lot of women dismiss or downplay their own symptoms, which further hurts their chances of getting diagnosis, let alone treatment. There may be a sort of feedback loop between dismissive doctors and self-dismissive patients. My own story in that department is that I wrote off a certain set of symptoms for years because they weren't serious compared to my "real", established problems, but an astute doctor pushed me to address them, and in the process we found out that they were caused by a much bigger underlying issue... specifically, an underlying issue that was also the reason my established problems weren't getting better. In that instance, skepticism would not have helped!
That said, and this might be controversial or uncharitable of me, but I think there can be a tendency for some women to fixate on their problems, which often makes them worse. (Does that contradict my "dismiss and downplay" observation? Maybe. Or it could just be that people fall into one camp or the other.) Sometimes it's garden variety hypochondria, and other times I think it's another type of feedback loop where you have problems that no one can identify and/or help you with, so you're suffering but not many people believe you, and your symptoms are unmanaged or only barely managed through a fragile collection of DIY measures. This puts you in a precarious position (understandably), which is obviously nerve-wracking, which in turn means you're either (1) hypervigilant to new developments in your condition, and so any change is a cause for alarm because you don't know what the implications will be, or (2) always worried that you'll deteriorate at a moment's notice, and the ensuing anxiety can cause your symptoms to worsen, so that anxiety becomes a self-fulfilling prophecy. (Ask me how I know, lol.)
There's also a saying I've heard along the lines of "you can't get better if you have to constantly prove you're sick," which I think applies to a lot of people who are struggling to get taken seriously by doctors: not only are you not getting proper treatment, but you're also in a position of having to prove the legitimacy of your issues, which means that any spontaneous and/or self-medicated improvement in symptoms might be a sign that the people who think it's all in your head are correct. (The implications here could be internal, in the sense that part of you worries they're right, or external, in the sense that you know they're wrong and can't let them think they're right.) After you figure your shit out and stop having to "perform" for people all the time, it's easier to allow yourself the space to get better—because now your problem didn't go away, exactly, it's just responding to treatment, or it's in remission, or so on. The validation of a proper diagnosis creates a kind of permanent road marker that lets you move on from it, but still point back to the road marker when you need to.
Another thing that's a slight tangent, but I think still relevant to gender disparities at play: sex hormones play a HUGE role in certain conditions. Most people won't realize the extent to which this is true unless they've undergone drastic differences in the types of sex hormones in their body over the years... but I have, so let me share my experience in that department :)
- High/unmodified estrogen: The worst. Things were always bad, but obviously much worse at certain times of the month.
- Using progesterone to lower estrogen levels: Significantly better, although still a fairly crummy baseline. Those times of the month were far less bad.
- Using testosterone to suppress/lower estrogen levels: SO much better, holy shit. It's hard to even describe. Not just the obvious things related to strength and muscle mass; there's an overall sense that certain things have generally calmed down. (Also, now no times of the month, which helps too :P)
> I think there can be a tendency for some women to fixate on their problems
My wife and I used to interact a lot with newly married couples at our church and if our experience is anything to go off of, you are correct and it's the one thing that drives new husbands crazy.
I don't think there's anything wrong with saying it. It's a generalization and doesn't apply to everyone, but it seems obvious to me that there are social pathologies that are sex-specific. As a man, I can rattle of dozens of pathological psychological us men are especially prone to. I think there's actually widespread recognition of this for men. I don't see why we shouldn't be able to say the same thing about women.
That's not to dismiss women. After all, the desire, especially of young men, to one up another is absolutely real (and can sometimes become destructive)! Or, the desire to simply grin and go on despite having some kind of emotional need is again a very real desire in many men. However, society realizes this and has actively tried to at least make men aware of these various states of mind that affect us. Whereas -- again if my experience as a mentor to new couples is right -- if someone ever tells a women that she is falling into a stereotypically female doom spiral, woe be to that man, or woman (in general, of course, there's always exceptions!)!
on 2) are you referring to https://en.wikipedia.org/wiki/Dancing_plague_of_1518 ? I don't know very much of the history, but the veracity of the claims is specifically called out in the wikipedia page. Given the year, I'd wager that the truth is that they died of something else...
And that's a very strange reason to be skeptical of womens' description of their symptoms in a medical setting. Is there evidence that women are more prone to 'social contagion'? You yourself said that "women are more prone to auto immune diseases" and that they are known to be triggered by viruses...To me, skepticism (and in my view, cynicism) of patients is one of the major contributors to distrust of evidence based medical advice.
Taking your last anecdote as an example, just because the patient's self diagnosis is likely incorrect, that does not mean that the symptoms they're experiencing are all "made up" and should be met with skepticism. There may be other reasons they're experiencing symptoms. A doctor shouldn't just say "Because you thought it was long COVID even though you weren't diagnosed with COVID, I'm convinced you're making the whole thing up". That's just lazy and unsound.
My hypothesis has always been that "chronic Lyme" is the natural consequence of America's shitty healthcare system. These people have something wrong with them, probably autoimmune, but getting to the bottom of health problems here is expensive and tedious.
On the other hand, Lyme blood tests are pretty cheap. And what the "Lyme literate providers" (aka grifters) don't mention is that some of the cheaper blood tests are prone to false positives in the presence of inflammation. Which most people with autoimmune diseases have :)
It took me years to get to the bottom of my own shit, and if I'd taken the Lyme test (that one of my doctors inexplicably ordered years ago) at face value, I'd probably be taking a sketchy cocktail of supplements and antibiotics right now instead of what I really need, which is Remicade.
Back pain is in many cases psychosomatic, but that doesn't make the pain any less real. Your brain is just another organ and it can attack your body, just like your immune system does when you suffer from an auto-immune disease.
If you noticed, I never denied anyone's suffering or pain. I merely pointed out that the mechanism may not be what the experiencer is experiencing. As a personal example, my knee pain has gone away from doing core exercises with my physical therapist, whereas my knee massages never worked. The problem was my posture, not my knee. That's all I'm saying.
The age peak is at 40-49 years. Indeed it's much higher in women but also even higher in transgender and bisexual people. It's almost as if stress from constant microaggressions makes you more susceptible to illness. What do I know, of course, I am not a doctor.
I'm surprised there are people here who are skeptical that long covid is real, as I know plenty of people in my community and social network who have been dealing with it.
There is national-level health guidance about long covid — I don't think it is very plausible that it is a simply "imaginary" problem:
> I'm surprised there are people here who are skeptical that long covid is real
I'm not surprised at all, considering there's been a consistent drive to move past COVID in the name of our poorly designed consumption-based economy and political expediency:
These articles are astonishing to me considering my lived reality; that people in my municipality were readily willing to move past COVID (and yes, accept it’s Rick’s), in hopes of gaining back their mental health and livelihoods. Much, much sooner than media and government institutions let them.
thegauntlet.news does not seem to be an especially credible source, and OP's account is just over 1 year old with only 68 karma. most of the posts appear to be a handful of sites like the jacobin or thegauntlet, and all happen to have socio-political axes to grind.
and a couple of basic posts about jellyfin to look legit. color me skeptical.
The blog includes original sources. Readers can draw their own conclusions, which was always the only sane option anyway in a media landscape captured by capital.
Why does consistent criticism of capitalism read as "fake" to you? Is it surprising that socialist/communist media outlets are few in number and struggle to thrive in an environment programmed with capitalist default assumptions?
Also, I lurked HN for almost a decade before creating an account. Sue me.
I do wonder how much of this is self-fulfilling atrophy. You're tired and sick, so you stay in bed. Then you get weak, making you more tired. Hopefully she can turn things around, regardless of underlying causes.
It sounds like for cases like hers, trying and pushing yourself to exercise only makes you weaker, not stronger. If you're curious, her channel has a number of videos about this.
Yeah, she was so active and productive and engaging as a youtube content creator. She is one of my favorites! So it's just stunning to see how profound whatever is happening for her is. She went from bright and engaging to basically a state of profound depression (I mean this in a physical sense.)
Hopefully she finds out the whole picture some day, makes a recovery, and will do an extensive retrospective.
This is an amazing piece of work for the graphical displays and data gathering completely independent of the compelling story of extended human suffering it presents. But -- and in no way do I mean this to detract from the quality of the work or the reality of the suffering -- I have to wonder what motivated the author to start tracking their symptoms so early if they were initially mild. This data is only interesting because it developed into a chronic disease, and there's obviously no way she could have known that would happen until much later. So why start keeping such meticulous records so soon?
I really wish that Tech people would not go outside of our purview to comment on medicine. Knowledge about how to build and maintain software does not give us any useful intuitions or insights into medicine, but the gigantic egos in this industry turn us all into pundits about what other professions are doing wrong. Stop trying to second guess and cherry pick medical studies that you half read.
it's definitely an interesting topic, because my skeptical mind is easily split in one of two ways-
either 1) it's a real phenomena that is under-diagnosed and ignored by medical professionals (something I believe happens) or 2) it's not a real condition and patients who suffer from it are suffering from a mix of mental illness combined with other real diseases that are exacerbated (something that I believe happens)
both sound like very real, very possible problems, and neither one seems more likely to me than the other. Or perhaps it's a big mix of both, on a case by case basis.
I don't have long Covid I think, but in april I got sick (some kind of flu, but my covid tests were all expired and dry and I couldn't test). Since then I have had many light headaches, but annoying enough to cause bad quality sleep and degrading cognitive thought processes. The GP suspects it is some kind of result of a possible COVID infection. It is a very odd virus.
> in april I got sick (some kind of flu, but my covid tests were all expired and dry and I couldn't test). Since then I have had many light headaches, but annoying enough to cause bad quality sleep and degrading cognitive thought processes. The GP suspects it is some kind of result of a possible COVID infection
I don't think people get how difficult it can be to interact with doctors when you have a chronic illness.
In high school, I started to get debilitating joint pain. I had trouble walking, typing, or writing. I went to many (at least a dozen) doctors. Most of them were unsympathetic and accused me of trying to get access to pain pills. Or told me that "this is just what puberty is like." Eventually, I happened upon _one_ doctor who gave me some blood tests and I tested positive for Celiac disease. Treating that fixed my joint pain.
Celiac disease is not a rare disease--it affects 1% of the US population--yet most of the doctors I saw didn't even think to test for it, despite join pain being a typical symptom. Instead, they gaslit me into thinking that it was "all in my head." Clearly they were wrong, and I have the blood test and endoscopy to prove it!
I'm a member of a "Young people with chronic illness" meetup, and my story is absolutely the norm. People who have conditions with clear and measurable diagnosis criteria go through many doctors telling them nothing is wrong before they find a doctor who will run tests. I can only imagine how much worse it is for conditions which are diagnosed "by exclusion" or something else that's not cut-and-dried.
A couple of years ago I did an EKG as part of a routine physical -- cholesterol tests kept coming back a little high and heart disease runs in my family. routine test, results came back I was fine. did the gym 2-3 days a week, walked a lot, no big deal, just eat less fatty foods.
then got COVID bad over the holidays. knocked me on my ass for about 2 weeks. blew through several boxes of tissues, got everyone else sick, etc.
did a physical again, cholesterol high again. told them I had the 'Rona bad over Xmas and they had me do another EKG. definite irregularity. ended up at the cardiologist, did a stress test, sleep study, reparatory test, etc.
verdict is that something damaged my lungs and/or heart and impeded my ability to absorb oxygen, and the best guess was COVID. I've made a pretty concerted effort to walk more and get back to the gym, but I gas out pretty hard and simply can't do long runs like before (though I'll concede it's getting better).
I think (hope?) we all agree that awareness of "long-covid" is important. But it's also entirely orthogonal to designations of a pathogen as being "over" or "not over".
Coronaviruses have been with humanity for a very long time, and people have been reporting post-infection syndromes surrounding them - and have been ignored or downplayed - for decades now.
There are five endemic coronaviruses, all of which likely started as an epidemic (two are documented of course) and evolved into what we call a "common cold", with susceptible populations suffering outsized effects.
Now that we've finally (and I think we can say, successfully) achieved endemic equilibrium from covid-19, it's important not to lose compassion for those still suffering (and to perhaps bring awareness online regarding this syndrome going back a long time - some have been suffering for many years).
We have not achieved equilibrium. There is wave after wave, and people are getting increasingly disabled. The virus continues to mutate but we have dropped our defenses.
Viruses become "mild" when they kill enough people for natural selection to take effect. That has not happened.
Selection is acting on viruses as well. A virus that makes you very ill won't spread as well as one that makes you a little ill because there are only so many people you can infect while bedridden, and the trend among dominant strains reflects this.
Selection acts on viruses far faster than on humans. And this effect is observable to the naked eye at the population level, with multiple powerful examples in living memory. The comment to which you are responding is borderline nonsense in this respect.
How on earth can selection pressure a virus that kills long after it transmits? When increased severity can sometimes improve transmission? This is 1800s transmission-virulence tradeoff hypothesis nonsense.
I think it's important because a lot of people still don't know what it entails.
For example, you say "cancer" and everyone has an idea of what that is. As of the 2000s/2010s, awareness has been rising about mental health and what it actually means to have mental illness. But if you say "long covid", most people still don't know what that really means to a sufferer of it. With its relative commonness compared to other, rarer yet more well-known illnesses (like DID), I'd say it deserves more attention than it gets.
If we think of public disease messaging as having limited "bandwidth", it makes sense to message about the most common, newest, and least understood diseases, wouldn't you agree?
The more the public understands what having an illness means for its sufferer, the more understanding the public will be of that person's needs and limitations, and thus the fuller a life that person will be able to live as their limitations are accommodated.
I think learning the specific names and details is a waste of time. That is important information for the patient and their doctor, but not the general public.
It doesnt add any value over the alternative of people having an unspecified chronic disease and requesting X accommodation, especially as accommodations needed or desired vary wildly
To your point, people know the word "cancer" but have no clue what it entails or what accommodations a specific person needs or wants.
People can march around raising cancer awareness, but it is also a pointless performative act for the benefit of the performer.
If you have a sick person in your life and want to be compassionate, figure out what accommodation they actually want or need.
Because most know someone that has had covid. Then still its not public knowledge it can be as debilitating as it is, even IQ loss and brain fog effect should be better understood by the public as well.
Plus its not well researched so we should at least be trying to get the symptoms that are proven out there so we can get more information on it
Well I don't think someone adapting to new disabilities or impairments should be punished for it. So if someone is getting PIP'd a few months after returning from covid and aren't performing, I think theres a lot of moral failings as a manager/owner/employer you can have if you don't take it into account.
Also, why is it wrong to want to provide grace to those dealing with it? Like suddenly losing IQ or getting a cognitive impairment is a huge part of someone's life, there are non-invasive and non-condescending ways to support them
I would like to see more scientific study on the matter.
I suspect it is probably a real, but rare thing, and that the vast majority of suspected cases are largely due to physical inactivity.
I myself had my first infection in March 2024 and had "lung capacity" issues for several months afterwards (~November 2024). I saw doctors about it, but they were largely dismissive, stating I needed to do more exercise, when I was in reasonably top physical shape (MMA 4x a week).
I felt like I was on my own, took charge, did my own research. What seemed to end up helping and get the "junk" out of my lungs was regularly using a spirometer on my own and, perhaps not wise, doing intense (as best I could muster) runs, which would cause me to cough up some of the awful-tasting fluid.
It ended up working out well for me and I'm back to my former capacity.
Similar story. After something that felt like a recurrence of a mild covid strain - persistent cough and chest discomfort. I doubled down on my running routine, making special effort to inhale and exhale as deeply as possible as I exert myself. Gradually I "coughed it out". Very possibly it's a councidence, but the extra exercise never hurts after all.
You don't have to pay anyone anything, just inform yourself and maybe buy some cheap vitamins, change/improve your diet, and some other free or near-free practices.
I don't get with people jump in that health care can only be had through a third party.
... Honestly? A lot. Your symptoms could get worse. You could turn a condition that's got treatable (if not currently curable) symptoms, into one with ones that aren't, or ones that are more severe, with worse treatment options.
And then the burden isn't just on you, it's on your family and friends who have to either take care of you, or watch you suffer more.
Long covid isn't nothing, clearly — but this kind of mindset is irresponsible. The "what have you got to lose" track is typically reserved only for people who have a terminal diagnosis, and even then, it's always a good idea to talk with your doctor about the pros and cons of the different experimental options you have access to.
That's quite an exaggeration. Why do you think the therapies should incur such a risk? Of course, it's on you to make sensible choices, but there are very large communities around long COVID out there, and the crowd makes a good enough job of sorting out what's legitimate and safe and what's not.
Again, I'm assuming we are talking about people in a state of abandonment by the medical establishment, some unable to function at all. I can't understand the risk calculation here.
Statistically speaking, you aren't well-equipped to make sensible medical choices. That's why we have medical professions — pharmacology, virology, internal medicine, and hundreds of others — each with people working in them with years of training and understanding.
The question is less, "will X formulation work as a remedy for long covid," and more, "what effects will X formulation have on someone with Y and Z conditions, in their late 60s, having undergone this, that, and the other medical procedures on so-and-so timelines, and still on a course of this other formulation to abate chronic symptoms as a result of complications during one of the medical procedures they underwent?"
This isn't really even a contrived example. Many people undergo medical procedures. Complications aren't common, but they're not rare, either, and they vary greatly in magnitude and long-term effects. A staggering proportion of people are on a course of some kind of medication (antivirals, pain relievers, more specialized stuff) at any given time. Figuring out how medications interact is aggressively nontrivial, and while there exist databases that can correlate medications and tell you if any are known to conflict with eachother (either always or under certain circumstances — information which, in most cases, was documented through case studies), this information still has to be reviewed by a trained medical professional — an MD familiar with the patient's medical history, ideally — who can say with a good degree of confidence whether a treatment is likely or not to cause the patient harm.
I can maybe get on board with naturopathic treatments, provided there's some scientific evidence behind them, but "alternative health" usually means homeopathy, mysticism, or something equally woo that has no basis in verifiable fact.
Usually it's about as scientific as a blood letting. "My friend Norma Rae had cancer and she sat under a pyramid whose sides were constructed of juniper wood cut in the golden ratio to focus the purifying energy of the salt crystals and she got better! Doctors don't know everything."
We definitely do not live in that ideal word where this is often enough true. Just take a look at the zerocarb/carnivore community and, just as a random example, IBD and Chron's remission, or keto and type 2 diabetes, etc.
Right, so if there's no evidence that something is effective at treating $medicalCondition then what is the difference between that and sitting under a pyramid made of juniper?
I just used it as an umbrella term. That you chose to associate it with "woo" exactly illustrate my point about reflexive dismissal.
I'm talking about things like high-dose vitamins, some medicinal plants, various therapies like cold exposure, etc. Nothing unscientific or mystical about them, just that, as with other chronic ailments, doctors are not trained or knowledgeable on, for the most part.
That takes time, interest from the medical community, and expensive studies. People with a chronic and unrecognized condition don't have that luxury.
But actually, yes, some of them have, maybe not for this particular condition, but one can make reasonable inferences that some are worth trying. And anecdotes have value too.
They can have value to an invidiual, not everything can or has to be science, and remember this is about an area that lacks any science, not even recognized by doctors.
> There is no doctor-delivered treatment, but there are many paths in the alternative health communities
Can you share some peer reviewed literature on these treatments? I've heard of a lot of "cures" shared by people like Bret Weinstein and Robert Malone, but they're thoroughly debunked and pretty obviously not real solutions, or placebos at best. Maybe you're referring to something else though?
I can't, I was making a general statement. There are several large communities around this, that have collectively assembled knowledge about things that sometimes work.
Unfortunately, yes. I still don't understand why it is impossible to consider the possibility that a medical intervention might in fact have consequences. Its obviously within the realms of possibility.
We know that vaccines saved hundreds-of-thousands of lives. It is also possible that they caused a small number of adverse effects (although the signal for this is so deep in the noise to be effectively uninterpretable.) Focusing on the potential adverse effects just serves to muddy the waters for those who can put the many orders-of-magnitude difference in perspective.
Vaccines tested properly yes. Experimental injections using a tech that never even worked in mice on the other hand has every reason to fail when experimented on humans. Btw at the time relatives pressured me to take the science juice I made a search in the national (French) vaccine adverse reactions and there was thousands of cases gone very badly, as far as death. Negating the issue isn't going to build any trust.
I brought up that it seemed reminiscent of Chronic Lyme's disease, and he said that yes, that's also a very questionable diagnosis.
I didn't really get into the weeds of that discussion, but it kinda put me off, since I have had several friends over the years who have had a hard time convincing the medical establishment that they have a real condition. Things like Chronic Fatigue, Ehlers-Danlos, Lyme's as mentioned, etc.
There's this historical view that since it is mainly self-diagnosed women affected by all these, it's just a case of "women complaining" or somesuch (maybe not stated so directly) and not a real condition or mostly psychological.
It gets dismissed, so it gets less research. Since it gets less research, doctors can say "there's not strong evidence to support it," and so the cycle continues. There's some sexism (and other -isms) inherent in the system, I do believe.
It's entirely possible that women, for biological reasons, could be more susceptible to these system-wide hard-to-pin-down chronic issues. I really don't know; I wish there was more research being done.
But it was just a weird moment where I got to witness that dismissiveness firsthand, from someone who otherwise I generally respect.