1374 Days – My Journey with Long Covid (2023)
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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.
Would be a fascinating study to have Long Covid patients drop LSD and see for effects.
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…?
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.
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 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.
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.
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.
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.
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).
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.
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.
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!
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.
https://www.amazon.com/Deep-Places-Memoir-Illness-Discovery/...
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.
https://www.cdc.gov/nchs/covid19/pulse/long-covid.htm
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.
Conveniently he provides the search term used to produce the "24,000" figure:
https://pubmed.ncbi.nlm.nih.gov/?term=%22long+covid%22+or+%22pasc%22+or+%22post-acute+sequelae+of+covid-19%22+or+%22postacute+sequelae+of+covid-19%22+or+%22post-acute+sequelae+of+SARS-CoV-2%22+or+%22postacute+sequelae+of+SARS-CoV-2%22+or+%22post+covid+condition%22+or+%22post+covid+conditions%22+or+%E2%80%9Cchronic+covid-19%E2%80%9D+or+%E2%80%9Cpost+covid-19+condition%E2%80%9D+or+%E2%80%9Cpost+covid-19+conditions%E2%80%9D+or+%E2%80%9Cpost-covid+condition%E2%80%9D+or+%E2%80%9Cpost-covid+conditions%E2%80%9D+or+%E2%80%9Clong+covid-19%E2%80%9D+or+%28%22long-term%22+and+%22COVID-19%22%29+or+%28%22longterm%22+and+%22COVID-19%22%29+or+%28%22long-term%22+and+%22SARS-CoV-2%22%29+or+%28%22longterm%22+and+%22SARS-CoV-2%22%29+or+%E2%80%9Cpostcovid+condition%E2%80%9D+or+%E2%80%9Cpostcovid+conditions%E2%80%9D+&sort=dateBut 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.
Many things are true without being proven yet.
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 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 not surprised at all, considering there's been a consistent drive to move past COVID in the name of our poorly designed consumption-based economy and political expediency:
https://www.thegauntlet.news/p/how-the-press-manufactured-co...
https://www.thegauntlet.news/p/media-celebrated-long-covid-a...
https://web.archive.org/web/20240802024326/https://docs.hous...
and a couple of basic posts about jellyfin to look legit. color me skeptical.
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.
Hopefully she finds out the whole picture some day, makes a recovery, and will do an extensive retrospective.
I know when I'm recovering from an illness I need to push myself a bit to regain energy. But it also makes sense that its not a universal experience.
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.
That's long COVID.
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).
There are a lot of things for people to think about.
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
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
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.
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.
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).
Viruses become "mild" when they kill enough people for natural selection to take effect. That has not happened.
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.
probably up to ~1700 days about now since COVID isn't over.