Settling in for the long haul
crookedtimber.org
crookedtimber.org
This is a good way to describe what I've experienced since as long as it would be relevant. I've always thought I just had a weak or slow memory. When asked a question about something I worked on in detail as little as 1 week ago it sometimes takes me on the order of 5-10 seconds to recall, but when it eventually "clicks" it's very clear and I can articulate details well.
Maybe a better way to put it, at least for me, is that much of my knowledge is deeply nested. When recalling something it feels like I'm actually traversing a graph of related concepts and memories.
It's extremely human to attribute the origin of inexplicable disease to a foreign agent like COVID just as much as people often search for the origins of their suffering in food, relationships, and other facets of life, but these are often not causal.
To complicate matters further, COVID presented tremendous stressors beyond the illness itself: fear of COVID, lockdowns, social isolation, disruption in work/schooling, social pressures around reopening and beliefs, inflation. People died. Routines were disrupted. Lives were upended. The environment these past two years were a breeding ground for affective disorders.
I only bring this up because a decade ago my mother began to suffer from fatigue and aches that to this day are a complete mystery. She was diagnosed with fibromyalgia which affects 2-4% of the population. Had this happened during COVID, she would have sworn on her life her symptoms were due to COVID. Even I would have agreed.
Again, the scale and immediacy of COVID is wild. The entire world got sick at the same time. That's at least 600M people globally, 100M of those in the US. This means 1 in 100K and 1 in 1M events will happen. Now blend that with the natural incidence of every neurological and mental disorder... yikes.
Our lab at Mount Sinai has linked gene expression patterns observed during acute SARS-CoV-2 infection with the subsequent emergence of long COVID symptoms that were still present a year or more after hospital discharge. The final paper is still under review, but you can read the preprint [1]. Multiple published papers have also reported similar associations between acute COVID and long COVID [2],[3] (these were published after the preprint was posted, but they are cited in the latest draft currently under review).
More generally, long COVID is not "one in a million" (and it's not 500k individual "one in a million" events). Very very roughly, somewhere around 50% of people with symptomatic COVID report some kind of long COVID symptom, though not all of those last for 12 months [4].
[1]: https://www.medrxiv.org/content/10.1101/2021.10.04.21264434v...
[2]: https://www.nature.com/articles/s41467-021-27797-1
[3]: https://www.sciencedirect.com/science/article/pii/S009286742...
The 50% rate you talk of for PACS I’ve seen published with a very wide confidence band (10%-60%) with varying symptom definitions. The PACS definition also generally starts at 4 weeks, which again, such a high incidence in that time frame makes sense to me given that the flu and other severe respiratory illnesses similarly linger even out to four months. All of the studies you cite show that PACS is also more coincident with age and preexisting conditions. None specifically discuss symptoms beyond twelve months in patients that were entirely healthy prior to COVID.
That is my population of interest. The rest makes sense. Is it really surprisinf that hospitalized patients have PACS a year out? Not to me. Is it surprising a lot of people still have symptoms out 4-6 weeks? I remember swine flu, so no. But a thirty to fifty year old with no preexisting conditions who now has persistent brain fog a year after? That’s very curious, and yet the research does not come anywhere near addressing that cohort.
What’s especially frustrating to me is that the definitions for long COVID are so broad and the cohorts used for these studies are so varied that they don’t explain at all the experience of long COVID as discussed in the blog post above or the stories in the comments. Given the seeming irrelevance of the research, I can’t imagine these people will ever find relief unless they break out of a COVID centric mindset and seek other therapies.
When I first started to try to understand what I had, I thought it was burnout, caffeine, mental health, being a second time parent, and even hereditary heart problems.
After getting all of that checked out, it wasn’t any of that. Yet I still had transient symptoms in my body that I didn’t have before catching the virus(2021). Weird symptoms like a week of chronic fatigue. Another like I may have a stroke or heart attack any minute. Another where I’d be out of breath for the most mundane things like getting out of the shower. All many months post infection.
While I agree with your overall point that it’s very possible people get sick from other factors or even make themselves sick after a traumatic event, since I have experienced this for over a year and documented many of my days through the year, I have no problem believing that long Covid is real. I had been living it.
If anything, I think it is more real than we think with current estimates, just that there’s a factor of not wanting to talk about Covid experiences openly due to shame and potential repercussions. That and there’s no known treatment when bringing up the concern without doctors writing you off(since they can’t do much here). One of the many reasons hospitals have a speak up policy although they can’t do much about it today.
It's always worth ruling out these things because they are more common than the really scary physical issues. That said, always worth getting physically checked out if concerned etc.
You can still barely function, it's just that everything is 100 times harder and slower. The part you can still function is what confuses people who have never been seriously ill and never even experienced post-viral fatigue for a few weeks.
And the age reference is apparently right in other ways, many diseases seem to leave long-term if not permanent DNA methylation problems which is exactly like "old age"
https://clinicalepigeneticsjournal.biomedcentral.com/article...
There's no cure for this because it would be like curing aging.
Because a decent (human) editor could clear that up.
Blows my mind that in this day and age people are still doing the "didn't happen to me, or I imagine I had/got over it in a week, so isn't a real problem for anyone else"
I'd expect it on facebook/twitter but not on HN where the average coder/hacker is a bit more educated. But maybe the problem is lack of world experience, not grasping the massive difference in genetics between people, the different kinds of environment exposure.
Definitely not wishing it on anyone but wow are people in for a surprise if it happens to them, then they'll "get it" but it will be too late. It's probably why the long-covid forums are full of suicides and suicidal declarations, they trivialized it until it happened to them and then feel boxed in to their own egos.