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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.

Fortunately in the case of Long COVID, biological mechanisms are being unearthed constantly for those that pay attention.

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.

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.

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.

"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.

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.

I agree with you.

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".

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:

    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

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.

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.

It really is a weird combination of fragility and incredible robustness

This is basically Taleb's Antifragile: Things That Gain from Disorder.

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.

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.

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.

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).

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.

I dropped acid in 2020 specifically to see if it would help with long COVID. It did not, but I did heal in time.

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…?

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.

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.

> 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.

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.

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

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/...

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.

Tim Ferriss is a noted non-vegan that had significant and well-documented issues.

Also professional athlete Jim Miller, I’m sure not a vegan

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.

Did you know there are females that work in medicine?

The data only partially supports this

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.