The haunting brain science of long Covid | Hacker News Reader

The haunting brain science of long Covid

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61 pointsamichail70 comments

A friend from college got long covid. In two years he lost the job, the GF, and the house. Went from being a buff, agile jujitsu black belt to shuffling along like an old drunk. In some sort of cruel irony he got crippling fatigue and insomnia at the same time. Can barely think clearly enough to write a simple email.

Long covid is not a pretty thing to see.

Are you completely sure that's due to Long COVID? Because that sounds like an extremely common story of drug addiction: someone turns their normal life, complete with career and family and a white picket fence, into homelessness and relying on petty theft to survive. It's incredible (in a bad way) how quickly fentanyl can ruin people's lives.

This, by the way, is why I don't discuss that a had long covid ever, with anyone. I don't need random strangers on the Internet that I've never met to believe me, or even believe in Long Covid (half the Internet thinks the vaccine has microchips anyway) but almost none of my friends believe me, which hurt, but fine. It's the medical professionals who didn't believe my symptoms until after there had been a preponderance of outside evidence that they bothered to take my symptoms seriously that were the worst. Yeah I'm not in the best of shape, but if I can't walk from my bedroom to my kitchen without getting winded, something is seriously wrong, and it's not simply my muscles atrophying from being indoors due to lockdowns.

Eventually medical science was able to be convinced of long covid, thanks to, or unfortunately because enough doctors and nurses caught it, pre-vaccine, that it was impossible for the medical industry to ignore. When a healthy 20-year old athlete has the same problems with extreme fatigue, doctors aren't as readily able to dismiss it. These days there are clinics that specialize in Long Covid. Even though they're not able to help everybody, it's still better than going through it, along, mid 2020.

But yeah, sure, dismiss it as a drug problem if it'll help you go about your day.

I have history with medical doctors (neurologists) telling me that “men don’t get migraines, I don’t believe you’re in pain and have migraines.” For many years. (It’s more manageable now, but without careful treatment I’ll get a migraine every day across almost every type I’ve heard of existing.)

The medical profession has a lot wrong with it. Yes some blame for people who just want drugs and lie. But that doesn’t excuse forced suffering at denial of treatment.

Though realistically medicine isn’t that helpful. They probably don’t have a lot of medicine for long covid, for example.

Personally with my migraines I had to very intensely monitor, react, and try all sorts of odd things until good treatments existed. Including rubbing hot pepper powder up my nose daily to try to exhaust the pain transmitters in the area.

Have you tried LSD or psilocybin for your migraines? I believe there is a pretty decent body of evidence that they are effective, even at small doses that don’t make you trip.

Have any anecdotes to share with treatment? For me, adding lamotrigine and cbd have done wonders for being able to head migraines off.

Ginger is surprisingly useful. Apparently it works similar to a cgrp antagonist. Ask a Dr about cgrp antagonists and cgrp inhibitors. I’ve even pushed ice to the roof of my mouth to fight the migraine pain before.

For a migraine, I once fell asleep in a yoga position that relaxes the trapezius, tens unit across my face and back (separately), a cooling pad across my forehead, and heating pad on my back for 50+ minutes. I had probably taken ginger and a cup of coffee too. I did wake up without the migraine. Traps felt very worn out.

Magnesium lotion might help. I’ve done aloe Vera plus menthol/something cooling before.

Definitely avoid alcohol like it’s the plague. Minimal caffeine per day (double edged sword), proper hydration, never second hand smoke, no strong scents, basically any triggers, etc. The list goes on.

The real trick is finding someone good. For me it was someone with a phd in psychiatry and md neurology who specializes in migraines and is familiar with movement disorders. Probably related to scoliosis of my spine. Dr has some mixture of stuff (including the dental pain killers) to inject for migraines that works miracles.

For long Covid I’m thinking paxlovid, then try to just nuke inflammation with anything known to fight it. But be careful…

That sounds like depression possibly due to the pandemic or other compounding life circumstances, not long COVID.

Post-viral syndromes are real and if anything aren't exclusive to covid.

Crippling fatigue is a pretty common long covid ailment. One belief is it stems from a previous ebv (mono) infection. Has he been tested for that? Been to any of the Long Covid clinics?

There is a notable overlap between long covid symptoms and the symptoms I've accumulated from ruptured capillaries. Tiny clots in capillaries that cause bleeding into surrounding tissues -

With the viral load landing in different places, and different capillaries taking the brunt, various different organs could be damaged. I worry that those ruptures are the cause for most with long covid, as they aren't easily treatable.

We should also consider the effects of repeat infections and how they might contribute to long Covid. The hope is that ongoing repeat infections are 'mostly harmless' as our bodies are primed to deal with the virus. However it will be a while before we can be sure.

One analogy I heard was that effectively we've brought back indoor smoking. Of course you can avoid indoor smoking by not using public transport, not going to the office, not socialising indoors, wearing a mask when shopping. However many can't/won't, and so will suffer the as yet not fully understood effects.

Smoking is a great analogy, it's distributed exactly like secondhand smoke, causes chronic inflammation in the lungs, systemic health issues, and for now most people don't believe in it! Problem is covid may be dangerous in even smaller doses than smoke.

I heard a quip that the east way to tell whether omicron is in a room was “is there air in the room?” (When omicron was new.)

Basically the new variants are so transmissible that if they’re in an area it’s like avoiding a tsunami.

Which isn’t to say individual avoidance should be given up. Do as much as you want (and I still wear N95 and gloves in certain situations). But society writ large can’t abate this level of spread.

We could see growing numbers of long covid sufferers for quite some time. Or, the virus might give us a break as sometimes happens in outbreaks. We should all hope it doesn’t mutate into something far worse, but it can’t be ruled out.

They are not harmless. Studies so far show that damage is cumulative

https://www.reuters.com/business/healthcare-pharmaceuticals/...

“Experts not involved with the study said the VA population does not reflect the general population.”

That isn’t going to change the core basic facts of how the immune system responds or slowly wears away upon repeat infections.

I’m not sure what basic facts you are talking about.

The VA population is a lot older and sicker than the general population and will contain a large number of immunodeficient individuals.

Further, the population of multiply-reinfected and symptomatic people is biased towards the immunodeficient since immunocompetent people tend not to get symptomatically reinfected.

Extrapolating the general case from these populations makes zero sense.

Indeed, but this can be seen as a signal for the wider population for further investigation - certainly we'd now like to prove the negative.

Also recently

"Nearly 60% of patients with long COVID had organ impairment a year after"

https://fortune.com/well/2023/02/14/long-covid-patients-orga...

https://journals.sagepub.com/doi/full/10.1177/01410768231154...

i don't know that it would be fair of me to bemoan the slow progress of long covid research given how new it is by medical standards, but at the very least i am glad that mainstream awareness and reporting seem to be increasing

it's quite scary that everyone who catches covid is rolling the dice on potentially debilitating, poorly understood complications, and i have to imagine people in general would behave very differently if they were mindful of this. and there's the systemic difficulty forced on current long covid sufferers, who have an uphill battle in persuading those around them (including, often, medical professionals!) that they have a real and sometimes severe condition

Covid is the crisis we keep ignoring, and there is no chance it wont come back to bite

If there were a prediction market for Covid shutting the world down again I would bet against you all day

….there are more crises than shutting down the world acutely. OP was referring to slower acting effects of covid

Instead of betting we can take simple precautions, individually. This is not a sport

let’s define “shutting down” properly, and I might take this bet.

Why aren't we updating the mRNA vaccines to better combat the new variants? Wasn't the initial thinking that we'd all get an updated shot once or twice a year?

We did. It's called the "bivalent" booster. We have paxlovid and the omicron variants are much milder than the previous strains.

I had simply missed the news, apologies.

EU: https://www.ema.europa.eu/en/news/ecdc-ema-statement-booster... (sep 2022)

Haven't been offered this, though.

Not sure about elsewhere but it's widely available in the us at pretty much any pharmacy.

In the US it's widely available, I got it something like a year ago.

We are? I got an updated booster for Omicron variants last June.

There is one, but it's not necessarily worth it because the original is "good enough". Also, future strains might be more like the 2020 version again; no reason they wouldn't be.

A better upgrade will be when it's a nasal spray. That's more effective at blocking transmission, and some people just don't like needles.

This only briefly links to me/cfs. Does anyone have any studies linking me/cfs and Covid behavior? I don’t understand why we’re treating long Covid differently than me/cfs, which has much of the same symptoms and also often occurs after a viral infection like the flu.

One more reason to forestall improving indoor ventilation building codes until the damage to the population is even more widespread.

And yet people look at me like I have two heads when I explain that I’m still actively making every effort to avoid getting Covid.

The long term brain damage is going to be a massive impact on companies who are forcing RTO and causing their employees to deal with repeat exposures to Covid from co-workers.

It's probable that people are unable to comprehend why someone would willingly undergo the same experiences we have all undergone for the past three years. I used to be firmly in the "I will do everything possible to avoid getting COVID-19" camp. However, I eventually contracted it and endured a challenging two-week sickness. After recovering, I decided that I am no longer willing to halt my life out of fear of catching it again because it is not worthwhile. Unless you have a compromised immune system or significant underlying health conditions, you will probably come to the same conclusion at some point. And then you will be looking at yourself from the past and wondering "what the hell was I thinking". As I do now.

People always seem to play the "live my life" card, and leave out the "I want people to like me" embarrassment of wearing a mask when others don't. You can mostly live your life while wearing a well-fit N95 mask, taking it off to eat and drink.

Never wearing a mask for convenience reasons seems not logical, if wearing a well-fit N95 mask helps. But not doing something due to social and self-esteem pressure is more understandable, if still not optimal. But few want to say peer pressure is a main driver of their behavior.

I've been saying this since the exact start of the pandemic. I already have brain issues and I simply do not want to roll the dice that are very much not in my favor. If I get covid and I live I pretty much know that the rest of my life is more fucked than it already is. But everybody's walking around the grocery store without masks on. Nobody gives to fucks about anybody else anymore. So here I am, still purposefully having my life on pause, the one time a week if even that that I go to the grocery store I still wear my n95 mask... I just don't get it. I don't. I'm supposed to be this impulsive flighty forgetful person with ADHD and issues with executive control but the entire population is acting like they have these issues instead of me. No one is able to do risk assessment of this very glaring issue in front of us.

I mean, there's the possibility that they ran their risk assessment and just overwhelmingly came to a different conclusion then you did. It's hard to take long covid seriously when there isn't even an agreed upon scientific definition of what it even is.

Is your current level of isolation something that your doctor has recommended?

The better question would be whether their doctor recommends they get Covid or avoid it, given their condition.

How you avoid Covid is a physics question, not a doctor question.

Psychiatrist* /s

I’m in the exact same spot. I’ve been trying to get back on medication for ADHD for the first time since childhood solely because I’m scared I’m not going to be able to experience mental clarity ever again if I get COVID. It’s impossible to talk to anyone about anxieties like that now because everyone has already determined that they got COVID and everything was fine, so therefore, I should stop trying.

Some part of me would love that, but like you said, I just can’t let go. Impulsivity be damned.

Where do you live where Covid is still a a problem? What do you think the solution to this problem is? What timescale are you looking at for this solution to completely fix the problem?

If everyone had to wear an N95 mask we'd need to permanently shut down the entire bar & restaurant industry, given that the masks are obviously not doing anything when people take them down to eat and drink. That would be millions of people out of work, tens of millions more permanently without the enjoyment of eating or drinking out, etc. I don't mean to sound curt, but society is simply not willing to accept that, sorry. We could lower the speed limit to 15 miles an hour for the entire country, including on highways, and that would save a ton of lives, right? We as a society are just not willing to accept that level of inconvenience.

Seeing as you'd like to make everyone else wear masks, could you rig up a closed-circuit gas or oxygen mask for yourself when you go to the grocery store? That way you're literally not breathing the same air as others, and it'd be literally impossible to get Covid. If your response is 'it's inconvenient for me to wear a gas mask and oxygen tank'- well, that's how the rest of us feel about permanent masking

I live in Israel and only the very old people wear masks because they have compromised immune systems. It was downgraded to the cold/flu and it is no longer checked at the airport. Most of the country is vaccinated, many 'boosted' , and it I have yet to meet anyone who hasnt had COVID at least one time.

I just now visited the USA and am surprised to see people still scared or concerned. It is totally over for most of the world. I wear a mask when I am sick so I dont get others sick, but it really has nothing to do with COVID in particular. Regarding COVID, I have to agree with the Israeli health authorities, which have largely dismissed the threat.

Your comment was perfectly reasonable despite receiving downvotes. It always surprises me to see a well-reasoned comment obscured in grey, and I fail to comprehend why individuals choose to downvote it instead of engaging with it. The only way I can comprehend this behavior is to assume that these individuals feel powerless in the face of the fact that the pandemic is over and express their frustration by resorting to downvoting others.

It’s interesting that COVID’s symptoms, including long Covid, are entirely the human bodies own doing. It’s all inflammatory. Long Covid is at least in part a demonstration of the connection between inflammatory pathways and metabolism. Common infection have been giving people CFS forever but finally the skeptics have been forced to shut up with Covid.

The solution to Covid will come through research on long Covid and other research on inflammation and metabolism — the reason that diabetes, obesity etc corrrlate so well with poor Covid outcomes is because those things as well as inflammation and other fundamental pathways and mechanisms are being messed up by something. When you diet and exercise, all of the above including Covid outcomes improve. That’s why kids are the least impacted — because they are the healthiest. These problems get worse with age. Once we learn how to fix whatever is at the top of the diabetes, obesity, inflammation pyramid we will make ourselves able to coexist with the virus. Besides somehow eradicating the virus, this is the only solution. It will also mean people will have very few heart attacks and cancer should be massively reduced as well. We have a lot to look forward to.

But it’s important to remember, this isn’t a Covid problem. It’s really an extension of the diabetes/obesity epidemic. The virus itself doesn’t hurt you.

I was wondering why you were down voted right up until the last sentence. Pretty much everything we associate with being sick is our own bodies, not the virus. Inflammation, fever, cough, runny nose, swollen lymph nodes, etc, it's all our own bodies natural defenses, not the virus. By the time we start seeing effects from the virus our bodies defenses have been overwhelmed. The conclusion from that is not the "the virus itself does not hurt you".

HIV definitely kills you. It doesn’t matter how healthy you are. Bacterial meningitis. The flu kills lots of kids. It’s just a simple fact that without metabolic dysfunction, covid is totally benign. This is an established fact recognized on both sides. People just don’t like to hear someone say that the virus doesn’t hurt you because it rubs them the wrong way politically.

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