6 ms·

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 i

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.

Workaccount2 2y ago
Doctors live and die by testing. If tests don't show anything, you don't have anything.
shadowtree 2y ago
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.
- bbor 2y ago
  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…
  - s1artibartfast 2y ago
    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.
- emchammer 2y ago
  I dropped acid in 2020 specifically to see if it would help with long COVID. It did not, but I did heal in time.
bbor 2y ago
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…?
- zdragnar 2y ago
  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.
- 0xbadcafebee 2y ago
  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.
- Volundr 2y ago
  > 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.
datadrivenangel 2y ago
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.
- sokoloff 2y ago
  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.
  - kyleee 2y ago
    It really is a weird combination of fragility and incredible robustness
    - FeloniousHam 2y ago
      This is basically Taleb's Antifragile: Things That Gain from Disorder.
anon291 2y ago
[flagged]
- everfree 2y ago
  > 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.
  - spondylosaurus 2y ago
    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)
zdragnar 2y ago
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.
jMyles 2y ago
Yes, it's a frustrating attitude. 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.
homefree 2y ago
Maybe they're correct? 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.
- bryanlarsen 2y ago
  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.
- interroboink 2y ago
  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.
- 2924010774 2y ago
  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.
nayroclade 2y ago
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.
- tehjoker 2y ago
  Fortunately in the case of Long COVID, biological mechanisms are being unearthed constantly for those that pay attention.
  - deleted 2y ago
    [deleted]
taeric 2y ago
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.
- interroboink 2y ago
  > 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). ---- 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!
  - taeric 2y ago
    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.
2OEH8eoCRo0 2y ago
Did you know there are females that work in medicine?
sampo 2y ago
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. https://www.amazon.com/Deep-Places-Memoir-Illness-Discovery/dp/0593237366 https://www.amazon.com/Deep-Places-Memoir-Illness-Discovery/...
simonsarris 2y ago
> 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.
- ebiester 2y ago
  Tim Ferriss is a noted non-vegan that had significant and well-documented issues.
  - kyleee 2y ago
    Also professional athlete Jim Miller, I’m sure not a vegan
- chairmansteve 2y ago
  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.
chx 2y ago
The data only partially supports this https://www.cdc.gov/nchs/covid19/pulse/long-covid.htm 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.
bikenaga 2y ago
In https://medicalxpress.com/news/2024-07-covid-puzzle-pieces-falling-picture.html 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: 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=date
UncleOxidant 2y ago
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.
- 2924010774 2y ago
  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.
- chairmansteve 2y ago
  Many doctors fall for the logical fallacy that "if it's not proven, then it's not true". Many things are true without being proven yet.
  - at_compile_time 2y ago
    "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.
  - null0pointer 2y ago
    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.
musha68k 2y ago
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

Workaccount2 2y ago

Doctors live and die by testing. If tests don't show anything, you don't have anything.

shadowtree 2y ago

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.

bbor 2y ago
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…
- s1artibartfast 2y ago
  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.
emchammer 2y ago
I dropped acid in 2020 specifically to see if it would help with long COVID. It did not, but I did heal in time.

bbor 2y ago

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…?

zdragnar 2y ago
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.
0xbadcafebee 2y ago
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.
Volundr 2y ago
> 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.

datadrivenangel 2y ago

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.

sokoloff 2y ago
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.
- kyleee 2y ago
  It really is a weird combination of fragility and incredible robustness
  - FeloniousHam 2y ago
    This is basically Taleb's Antifragile: Things That Gain from Disorder.

anon291 2y ago

[flagged]

everfree 2y ago
> 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.
- spondylosaurus 2y ago
  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)

zdragnar 2y ago

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.

jMyles 2y ago

Yes, it's a frustrating attitude. 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.

homefree 2y ago

Maybe they're correct? 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.

bryanlarsen 2y ago
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.
interroboink 2y ago
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.
2924010774 2y ago
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.

nayroclade 2y ago

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.

tehjoker 2y ago
Fortunately in the case of Long COVID, biological mechanisms are being unearthed constantly for those that pay attention.
- deleted 2y ago
  [deleted]

taeric 2y ago

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.

interroboink 2y ago
> 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). ---- 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!
- taeric 2y ago
  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.

2OEH8eoCRo0 2y ago

Did you know there are females that work in medicine?

sampo 2y ago

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. https://www.amazon.com/Deep-Places-Memoir-Illness-Discovery/dp/0593237366 https://www.amazon.com/Deep-Places-Memoir-Illness-Discovery/...

simonsarris 2y ago

> 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.

ebiester 2y ago
Tim Ferriss is a noted non-vegan that had significant and well-documented issues.
- kyleee 2y ago
  Also professional athlete Jim Miller, I’m sure not a vegan
chairmansteve 2y ago
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.

chx 2y ago

The data only partially supports this https://www.cdc.gov/nchs/covid19/pulse/long-covid.htm 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.

bikenaga 2y ago

In https://medicalxpress.com/news/2024-07-covid-puzzle-pieces-falling-picture.html 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: 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=date

UncleOxidant 2y ago

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.

2924010774 2y ago
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.
chairmansteve 2y ago
Many doctors fall for the logical fallacy that "if it's not proven, then it's not true". Many things are true without being proven yet.
- at_compile_time 2y ago
  "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.
- null0pointer 2y ago
  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.

musha68k 2y ago

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