-- long hauler here - I used to be the smartest person people knew - everyone would always say "wow.. you're so smart" - my memory was extremely good - I could remember most conversations I'd had - how I'd learned the things I knew came with ease - I'd be the one people would always pull into conversations to help problem solve - now - I don't know how to describe it - I know the stuff is still in there - but it's like the map to the knowledge has faded - now I spend a lot of time remembering how to remember - it's been particularly difficult as - for better or worse - I really defined myself as the smart person in the room - I really wish I could get back to how I used to be - I've tried everything I can think of but so far nothing has really helped - to be honest when I first realized what was going on I became suicidal - now I've learned to accept it - however I still hide myself away from everyone --
People who are very intelligent and have ME/CFS are also much more likely to have hypermobile Ehlers Danlos Syndrome (hEDS). Most people who have it don’t know that they do, doctors who test for it have a 90% false negative rate. Some people with it are not even that hypermobile It’s best diagnosed with comorbidities that occur in the family on an autosomal dominant basis. https://ohtwist.com/about-eds/comorbidities
> I know the stuff is still in there - but it's like the map to the knowledge has faded
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.
-- in fact quite the opposite - I used to struggle to sleep - often I would sleep 5-6 hours and be just fine - since "recovering" from covid - I can't get enough sleep --
-- it started after I was diagnosed with covid the second time - the first time I had covid I was physically quite sick - but mentally - post recovery didn't struggle - about four months later I got covid again - this time my only symptoms were loss of smell/taste and some weakness - however I noticed I gradually started to forget things - it was like the lights got turned down in my mind - nothing came through clearly or quickly anymore - my thinking became a struggle not a joy - this decline lasted about two weeks and then hit the point it's at today - that was seven months ago and I've noticed little to no improvement on my cognitive facets - the weakness/sluggishness I can treat with caffeine tablets (I'd never been into caffeine/coffee perviously) --
How is everyone so sure 12 month+ symptoms are due to COVID-19? Yes, I accept 3-4 month coughs and brain fog can be attributed (many papers on this, it is also well documented with the flu). Yes, I accept chronic issues evolving from pre-existing conditions and severe illness. However, we had 100M people in the US alone be infected with a virus in a two year span. Many people develop chronic fatigue, mental illness, and hosts of othe syndromes in normal times often without clear cause. These symptoms are at times written off as "made up" as well.
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.
> How is everyone so sure 12 month+ symptoms are due to COVID-19?
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].
Your cohort targets hospitalized patients. It is no surprise to me they have symptoms which continue a year out. If you read my opening I admit that. Also this population is bound to be riddled with other confounders given the population of individuals who were hospitalized looks quite different than those who were symptomatic in the general population.
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.
It's true that our cohort is all patients that were hospitalized for COVID-19, but notably, our long COVID questionnaire specifically asked which new symptoms they had after COVID-19 that they didn't already have beforehand. That, plus the direct link to acute patterns of gene expression and antibodies specific to SARS-CoV-2, makes a strong case for a causal link between acute SARS-CoV-2 infection and long COVID a year later. While we don't look at mild non-hospitalized cases in this study, there's no reason to think a causal link wouldn't exist there as well.
I don’t think it’s far fetched to get a virus, test positive for the virus, have lingering symptoms for 14 months and think it’s something related to the virus.
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.
My estimate is ~6% or roughly 1/20 of people who get covid will develop long covid. And it’s my opinion that the vast majority of them have a genetic predisposition to it. Many were already sick before covid but only became aware of it after getting worse from covid. Most people with my genetic condition of hEDS will never know they have it if not for some trigger that makes it much worse. BTW Fibromyalgia has a huge overlap with hEDS… hEDS often has an anxiety disorder component which can make it look like a mental disorder and it kind of is given the interplay of the brain and immune system. But it’s a physical problem than needs real intervention.
You’re getting to my point. There are a whole host of symptoms that can be triggered for numerous reasons and the interplays are tremendously complex. It demands intervention but if we keep discussing this as COVID-specific symptomology the underlying condition may remain unexplored and untreated.
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.
It seems complex but it boils down to the same things; the major discriminating symptom should be Post-exertional malaise (PEM) which is a sign of immune dysfunction. It’s common to ME/CFS and Long Covid. Everything else is just jumping on a bandwagon. The only real difference I’ve seen long covid has to ME/CFS is some additional tissue damage. The problem is that ME/CFS is very difficult to treat and doctors typically have no clue, so what hope do patients have.
The genes haven’t been identified yet. There are lots of different mutations and we don’t yet know all the pathogenic ones. The people involved seem quite incompetent.
Everything takes me way longer now due to a combination of brain fog, tiredness, and depression reducing my effective working time to about 2 hours a day. Unfortunately, US American society is already treating this like agent orange or gulf war syndrome: they think it’s fake or won’t admit it’s real so that millions will have to get by on our bootstraps. Lucky for me I can grind out some code everyday that’s minimally viable do I don’t get fired, but my small company isn’t doing so well, so hopefully I recover in time to job search.
Curious how similar my situation is to yours. I don't know if I have had covid as I have had no symptoms suggesting so; no reasons prompting a random test. Yet here I am suddenly running on fumes, just barely being able to produce the minimum that my small somewhat struggling employer is asking of me, while hoping that I'll somehow snap out of it soon enough in case they suddenly decide to "let me go".
As difficult as it is to conclude anything based on a short description online, you just described what is more likely to be classic burnout rather than scary pathology. That said, burnout is really bad and not a minor problem.
I've been burned out twice before. This cognitive sluggishness is similar, but not identical. Lately there's nothing particular going on at work that has had a consuming or stressful effect on me, but that doesn't entirely rule it out.
Make sure you don't have https://en.wikipedia.org/wiki/Boreout as well, which I've actually experienced (it led to a lot of resentment and then led to classic burnout).
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.
I swear that Bore-out is an under-discussed topic with remote work. The pursuit of WLB can easily turn into a do nothing job. A significant portion of the population want to describe their job as "exciting" or "fast".
The easiest way to explain to outsiders CFS-ME and the versions of long-covid that present with years of chronic fatigue is that you are now instantly 80 years old overnight.
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"
I have hEDS which for me comes
with ME/CFS which a very similar condition to Long Covid. It is something I’ve had to deal with my whole life. Despite what doctors may say there are meds that help a lot. Low Dose Naltrexone (LDN) being the most likely to help brain fog, then meds for dysautonomia beta blockers etc. And other neurotransmitter meds to get going again. Doesn’t work for everyone but does work for many. hEDS affects a decent percentage of the population, can get quite debilitating, has been known about medically since Hippocrates, and yet according to doctors still doesn’t have a treatment. So I would advise against waiting for doctors to figure this out.
Anecdote, sure but I've had COVID 3 times so far across at least two strains (Delta, Omicron and maybe a newer mutation of Omicron) and no, no long term symptoms that I can identify. Likewise for at LEAST a couple dozen friends and acquaintances of mine. I'm sure that long COVID does exist, but I hesitate to give so many claims credence when they could easily also be the result of ambiguous things like general hypochondria, misatribution and sickness fetishism, all three of which absolutely exist too.
It turns out that with enough data it’s pretty easy to disambiguate and do attribution properly. There is plenty of good research that has been done on long covid. Long covid was obviously going to happen because it is similar to MERS and we knew that MERS caused ME/CFS in a decent percentage of those who got it.
Something I wasn't expecting in all the comments on this post is the steady drone of denial, that long-covid might not be real, I came back the next day and sure enough it's all over the thread.
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.
I didn't deny that long covid exists and I don't claim this writer is lying, but sentimentality aside, like I said above, all of the possible alternative causes exist too and why deny them for the sake of being polite?
