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Comment by s5300 | Hacker News Reader

As the article somewhat gets into, fatigue is a terrible descriptor for the litany of issues that can ravage one post-infection.

Seemingly mild mono (Epstein-Barr) absolutely ruined the brain of one of the most talented dual-major Mechanical/Electrical engineers at my university in his last year. Saw him crying in more than one of our professors offices after he tried to come back because he couldn’t think straight enough to do 8th grade math anymore. Never recovered to my knowledge of a few years after, but it’s been a few years since I’ve heard anything of him. Medical imaging, at that time, purportedly showed nothing wrong with his brain. No help to be had.

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Sadly I'm in the same boat, for years now. Fatigue is such an inadequate term. Can't even sit up for long without getting exhausted. Still trying treatments but to no avail so far. The impact of Long Covid seems to be drawing a lot of eyeballs to this though so I'm hopeful something will be found.

It's taught me patience and empathy. I used to teach others how to program and when people couldn't get something I presumed they weren't trying hard enough. I get it now. Now I read the requirements or exercise or puzzle or whatever and there's just nothing where once there was a bubbling and filtering of ideas or whatever we call thinking.

There was a recent survey paper in Nature covering this syndrome that can triggered by various infections https://www.nature.com/articles/s41591-022-01810-6

Be well, and get your own Illness Benefit Insurance policy

Epstein-Barr is widespread - it sits latent in the human body, occasionally and opportunistically reactivating. It's detectable in 90% of humans, though most people don't have symptoms. According to functional medicine doctors I've talked to, it's a significant factor in a lot of what is understood to be long covid. I've had two reactivations in the past 3 years, each of which lasted ~6 weeks. The immune system does eventually get on top of it (assuming no other conditions keeping your immune system under siege) but while it's running rampant, you really are operating at just a fraction of your capabilities.

Epstein-Barr infection has also been found as a trigger for multiple sclerosis.

https://med.stanford.edu/news/all-news/2022/01/epstein-barr-...

fuck that's heartbreaking. that's a fate worse than death

If you think that's a fate worse than death, then I suspect you've never actually died.

to be left alive, a shell of your former self, know that you used to be capable of, but no longer are. not being able to hold a thought in your head when previously, your were one of the smartest in the room. being so exhausted all the time that just leaving the house is an accomplishment, when previously a day of snowboarding would be a blast. the absolute impotence of it. is life even worth living, knowing your former glory has been robbed by a virus that some people think was a fuss over nothing?

can you imagine what it's like to need other people to do basic life shit for you, because you're now a disabled invalid, incapable of being self sufficient. needing to be waited on, hand and foot. the worst cases aren't too far off from polio needing an iron lung just to breath.

the sweet release of death would be less cruel.

I've had something similar (post-concussion syndrome) that's slowly improving, though I'll never quite be the same.

You live a life where you're intelligent and capable and happy and then it's torn away from you. You remember when you were capable, but you can't do it anymore. Somehow the things you learnt on a whim before it happened become your defining knowledge. What was trivial becomes incredibly difficult; what was difficult becomes impossible.

I'm mostly over that now, fortunately. But if it were permanent I'd see it as a fate worse than death.

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