Hacker Newsnew | past | comments | ask | show | jobs | submitlogin
Long Covid, Cognitive Impairment, and the Stalled Decline in Disability Rates (federalreserve.gov)
137 points by deegles on Aug 27, 2022 | hide | past | favorite | 168 comments


Going to tread lightly here, but here is the section on 4 "facts" about long COVID:

> In this note, I use two survey datasets to document four facts about long COVID in the United States. First, long-term COVID symptoms are much more prevalent among women, adults under 65, Hispanics and Latinos, and non–college graduates than among other demographic groups. Second, COVID "long haulers" cite specific physical and cognitive impairments commonly associated with the condition in media and medical reporting. Third, the share of working-age adults reporting serious difficulty remembering, concentrating, or making decisions has risen steadily since the start of the pandemic. Fourth, growing shares of women and of non–college graduates report simultaneously (i) being out of the labor force due to disability and (ii) experiencing these cognitive difficulties.

I'm generally interested in a good summary of what medical research tells us about long COVID. Reason being I think it's fair to hypothesize that the following facts are at least fair confounding factors:

1. Whenever economic situations become weaker, disability rates rise. This is largely because people who are "on the cusp" may find it worth it to find a job in good times, but in bad times find it's not worth it to "push through" their disability.

2. There has been so much news coverage about long COVID that it's difficult for me to tell how it compares to other long term viral syndromes. E.g. infection with Epstein Barr virus has long been implicated in a lost of long term conditions like CFS and MS. Is long COVID more common in COVID sufferers than these other syndromes are in EB infection?

3. There have been huge societal changes that have occurred in the past couple years that can make it difficult to tease out the effects of COVID alone.

Not trying to discount any individual suffering from long COVID symptoms, but I think caution is warranted when trying to ascertain the effects at a society-wide level, especially when all the data for this article appears to come from self-reports.


These four observations sound like a Rorschach test.

If one thinks “long COVID” is imaginary, one can read these facts as confirmation of placebo effects or mass sociogenic illness.

https://en.wikipedia.org/wiki/Mass_psychogenic_illness

Or, if one thinks it’s plausible, each can be read the other way, for instance:

>> long-term COVID symptoms are much more prevalent among women, adults under 65, Hispanics and Latinos, and non–college graduates than among other demographic groups

OK, so groups least likely to choose to isolate, or be able to isolate (because they have to work).

>> Second, COVID "long haulers" cite specific physical and cognitive impairments commonly associated with the condition in media and medical reporting.

Put another way, reporting and media sound like what people cite.

>> Third, the share of working-age adults reporting serious difficulty remembering, concentrating, or making decisions has risen steadily since the start of the pandemic.

Condition attributed to a disease known to be experienced by a steadily increasing population share, steadily increases share reporting — confirmed!

>> Fourth, growing shares of women and of non–college graduates report simultaneously (i) being out of the labor force due to disability and (ii) experiencing these cognitive difficulties.

So these go together, and see #1 — everything is as expected.

Remarkable how simultaneously contradictory all four interpretations can be, almost as if crafted to be so.


To emphasize, though, and the point I was trying to make is that it's possible (and I think likely) that both of these statements are true:

1. Long COVID is a real disease that can cause debilitating symptoms.

2. A significant number of people who claim to suffer from Long COVID actually suffer from something else.

The only thing that puts me more in the "I think #2 is a lot more prevalent than people think" camp is the astronomical amount of press that "Long COVID" has received, coupled with the fact that the majority of people in the US have been exposed to COVID, so it's easy to attribute any general feeling of being unwell (e.g. fatigue, brain fog, etc.) to the fact that you probably had COVID in the not-too-distant past.


I would be in camp #2 as well, was it not that we are discovering tests showing evidence of Long COVID. See for example this blog from a long hauler: https://mylongcoviddiaries.medium.com/i-finally-have-a-diagn...

There seems to be evidence that tiny blood clots are causing the wide variety of symptoms. https://worldfreedomalliance.org/au/news/could-tiny-blood-cl...


I don't disagree with you.

Even so: it's possible for most of it to be "not real" or "something else"-- but still carry a terrifically high disease burden.


COVID is definitely not the only case where acute form might shift into a chronic one. For a recent overview see, e.g., Unexplained post-acute infection syndromes[0].

> As of now, the true extent of PAISs remains uncertain, as there is a significant risk that a lot of cases, especially under sporadic circumstances, remain unrecognized.

> The research that is available concentrates on PAISs in the context of either well-monitored acute infectious diseases, or as a follow-up of outbreaks and epidemics.

[0] https://www.nature.com/articles/s41591-022-01810-6


> E.g. infection with Epstein Barr virus has long been implicated in a lost of long term conditions like CFS and MS.

Sorry for the complete non sequitur, but this is the first time I've seen a reference to Epstein-Barr outside of the Sopranos (Tony's sister Janice is on disability because of it). I had no idea it was linked to MS.



That was only reported pretty recently.


Derek Lowe did a nice write up of a serious study that found 189 long Covid cases and 120 controls. PCR positive and having long term Covid symptoms was the inclusion criteria.

They then did a massive battery of tests - inflammation biomarkers, nerve damage biomarkers, lung function, congestive ability, etc.

And the conclusion? There was no difference between the groups: there are no diagnostic findings that would allow you to even say for sure that post-Covid even exists, biochemically.

https://www.science.org/content/blog-post/search-long-covid


That just means there's no diagnostic test, not that the symptoms aren't real! There aren't biomarkers for chronic pain, either, which presents a serious problem for people seeking treatment.

This is the "I closed your bug report because it works on my machine" of medicine.


The challenge is when physical symptoms aren’t backed up by measurements of actual function.

When people complain of lung or heart problems but all tests are normal (oxygen levels, cardiac efficiency, lung capacity, exercise tolerance).

When people claim cognitive decline yet all measures of cognitive ability are normal.

It would point to a strong psychological component for at least some people - which was found in the study. Symptoms were correlated with those having a history of anxiety disorders (prior to Covid).

There was also another study (I can’t find it right now) of self-reported long Covid suffers.

They ran tests and many of them had never even been infected with Covid..ever.

This isn’t to say that post-viral syndromes aren’t real. But it does suggest that self-reporting isn’t all that accurate.


It raises entirely valid questions, none of which should undermine the patient's experience. Listen to the patient: they're telling us something.

To anticipate: "Objective" measures are of course useful, but only form part of any picture.


Of course. If the patient is experiencing symptoms those should be addressed.

And this data helps to narrow down possible treatments based on solid data with regards to system dysfunction.


As a software engineer I have a wide variety of tests to my disposal. Still, there are things which I would not be able to test for. EM interference between chips in a data center. Row-hammer attacks. Clock jitter. My running processes would fail, but there is no way for me to prove a specific cause.

So we search deeper. And sometimes we find something: https://mylongcoviddiaries.medium.com/i-finally-have-a-diagn...


If you are truly interested do more research focusing on clotting/microclotting. Dr Gustavo Aguirre is a true pioneer, his protocols (and others' protocols) which are based on that truly work, I manage a long covid group with 6K people.


> I'm generally interested in a good summary of what medical research tells us about long COVID.

Has there been any good summaries?


You might want to start with some of the original articles on post-viral fatigue syndrome going back to the 1980's. I suspect there's not much really new with long COVID.

https://doi.org/10.1177/014107688808100608


Yes, Eric Topol wrote one up for the LA times recently



I kind of don't care about most of the symptoms listed in the studies he cites. Getting headaches or random fatigue in no way compares to the PEM of CFS or persistent brain fog which causes severe executive dysfunction. I find the whole discussion around long covid to be frustrating: simultaneously inflating figures on one hand while underrating the truly severe outcomes (which can happen with all viral diseases).



And I want to add that side effects of the vaccination are often treated as long COVID as well. Long COVID is a representation of symptoms, therefore this is not unusual that it is classified the same, however one might mistake these as virus related when some are not.


They are very similar, but if you have the data from both set you can clearly see the difference.

Unfortunately both long covid and vaccine side effects are underplayed.


> They are very similar, but if you have the data from both set you can clearly see the difference.

It depends also on case by case basis, however long COVID is diagnosed in some patients with/as vaccination side effect. Even if it might be possible that these can be clearly differentiated, it's not done. It is also not that clearly defined and therefore overlaps with some other syndroms like fibromyalgia, which might be a confounding factor as well.


Been into the topic since the earliest days of long covid, Apr 2020.

If you have issues make sure you have dealt with possible microclotting issues, it is the main thing everyone must check/treat who had covid.

As others mentioned in thread, check FLCCC's IRecover protocol and also study antifibrinogens and Gustavo Aguirre's work. He was months before anyone else from the start regarding both covid and post covid treatment.

I myself manage a hungarian long covid group with almost 6K people now, started 1.5 years ago. Curating resources, translating studies, gathering good docs and protocols.

List of treatments to have a look at: lysine (2000-2500mg, slowly increasing not to break microclots too fast), lumbrokinase/nattokinase/serrapeptase/bromelain, high dose B1 (even 2000-3000mg HCl form), in case of brain fog you might consider fluvoxamine, and of course there is the one which helped A LOT of long haulers I know but is censored...: www.ivmmeta.com Also diet/antihistamines might help for some and in case of low energy (if microclots are surely gone, if not I'd focus on it first) then high dose flush niacin. Proved many times.

It is so absurd they can still censor it and that many docs blindly following orders.


“Good health is a crown on the head of a well person that only a sick person can see.”

- Robin Sharma


Anecdote, had covid in the end of 2020, still dont feel 100%, maybe i just grew old while sick and thats just life, but i feel like shit comparable to what i felt before it.


Work on lung exercises for fatigue.

I have had health complications that caused the same problem as long covid seemingly causes; tiny tiny clots wreaking havoc on capillaries. I think it depends on where the viral load landed and grew, but if it was in your lungs, you would maybe need to treat it as if you have chronic bronchitis.

If it was in your sinuses and mouth, messing up your senses, then I'm sorry, idk what to do. ...maybe a similar approach with anti-inflammatories, hopefully something for your nerves too.

Hope you're good atm


Yeah, had literally 100s of lab tests, all came back ok. Exercise intolerance for at least an year. But im slowly getting back on form, gym doesnt kill me anymore. Still have some random digestion issues, slightly elevated HR and just generally feeling worse than before. But ill look into lung exercises, thank you for the tip


Did you tests include inflammation markers such as sedimentation test D-dimer, CRP, or Ferritin?


CRP and ferritin, not the other two i think


How much did you self isolate? I’ve noticed that the elderly who self isolated while having it or being around partners who had it have gone through a marketed mental decline. I think physical declines are probably there as well especially as we all age it is difficult to turn back the clock in physical fitness, past 35 more so.


This is me also. I was also isolated seeing only one other human for the entirety of COVID (including now, but I'm gonna move soon so I can at least go into a physical office). I feel like my brain still works at lots of stuff, once it gets going, but I forget what I'm doing randomly and I think I used to be not _THIS_ bad at interacting with other humans :/


Isolation is associated with much higher risk of serious health conditions:

https://www.cdc.gov/aging/publications/features/lonely-older...

Humans are social animals. COVID response policy to encourage more physical isolation could have deadly implications.


All this was completely obvious to anybody paying even a little bit of attention. Sadly their voices got shut out of the conversation; their proponents yelled at, called horrible names, etc.

What society did over the last two and a half years is shameful. Society encouraged and cheered on what is basically mental illness.


It's not just you. I know a physically fit personal trainer that has had long COVID for over 8 months now.


It's not just you. I know someone who had Long COVID for 1 month. I also know someone who works with someone who was running marathons every weekend and now they can't walk stairs because of knee pain, all because of COVID. I know someone else who had COVID and then was not doing any sport or social interaction for almost two years, barely left the house and who feels much more tired and depressed now, because of COVID. I know a child, who had COVID, then didn't have proper education for nearly two years and now is really underdeveloped, because of COVID of course.


Yeah, I'm definitely not where I was before. Dunno if it's the effects of covid, but social isolation and lack of physical exercise certainly hasn't done my overall well-being any favors either.


I'd argue that it feels precisely like that - that you became old in last months.


this is exactly me also


I've heard numerous stories like yours, except about getting the COVID vaccine.

Anecdotes are really not useful for teasing out general effects.


That's abstractly true, but in this case we also have studies that show long COVID, including one that compared brain scans before and after COVID and could see macro brain damage. The brain is an incredibly delicate organ, it isn't surprising that a severe virus can do damage do it.


The anecdotes still don't add any useful information, because there is no reliability on their representativeness of the overall data, by the very definition of anecdote.


I don't subscribe to this scientism perspective on epistemology when it comes to an individual forming views about the world based on their own experiences. Individual heterogeneity and the level of detail you're able to observe in your own N=1 anecdote can mean that the richness of that dataset is actually superior to an N=1000 dataset in many cases. I am a data scientist and often learn more about a phenomenon by exhaustively digging into a single example than trying to find broad trends in the larger dataset. Basically - avoid methodological purism when it comes to studying phenomena.


The anecodote does not reliably tell you anything about the phenomenon. The experience could be due to an entirely different phenomenon, which you are misattributing to the phenomenon in question. Only the scientific approach can make reliable causative associations.

You have not made some epistemological breakthrough with your anti-scientific take.


While I agree that that particular anecdote tells us nothing -- because it's void of details -- I disagree that anecdotes categorically can't tell us anything. My take isn't anti-scientific, it is against this particular brand of scientism that believes that single examples are useless. Consider that medical scientists often use case studies to better understand phenomena, because this allows for higher resolution investigation of a single example in order to shed light on phenomena, and it addresses edge cases due to individual heterogeneity that cross-sectional data can't address well. In light of this example, I would argue the anecdote vs data is a false dichotomy if you're defining anecdote to mean "example from a single person". If an anecdote is studied properly, as it is in case studies in the medical literature, it is data. It's just a different kind of data and a different mode of scientific study to lower resolution cross-sectional studies (which are also great and necessary, but have different strengths).


>>it is against this particular brand of scientism that believes that single examples are useless

Single examples are useless for discovering generalized properties of reality.

Medical case studies are only useful in conjunction with knowledge about causative associations that were discovered through statistical analyses.


Sure, you are right. I still feel like shit after covid.


Funny, I was just searching if the temperature dysregulation - randomly sweating and feeling hot or cold without a change in body temperature - might have anything to do with my covid infection two months ago (the answer seems to be: maybe, who knows!).


FYI, temperature dysregulation can be a common sign of hormonal balance issues (thyroid, etc could be a factor), so if it's causing you a lot of trouble you should see if your doctor can check the levels of key hormones. IIRC testosterone and estrogen are two key ones that can be out of whack for various reasons and will cause temperature dysregulation. The test is pretty cheap and easy to do with a regular blood draw so it shouldn't be too hard to get it done if they haven't already checked it before.


Cheers, I'll bring it up with the doc!

Luckily he's one to take it well when his patients bring up internet-sourced thoughts or suggestions :)


Thermogenesis is controlled by the autonomic nervous system (ANS), dysfunction of the ANS is called dysautonomia and it is a central component to Long Covid. There are a variety of medical interventions that are helpful for dysautonomia.


The light searching I've been doing since my last comment had indeed been leading me in that direction. I even came across a mention of this here on HN from a few months ago[1]. A sibling comment to yours also suggested a hormonal imbalance as a possible cause which can't hurt getting myself checked for.

Some anacdata: This strange temperature dysregulation feels somewhat similar to what a too high dosage of my ADHD meds does to me.

Anyway thanks for your comment. I'll be seeing a doctor about this for sure.

[1]: https://news.ycombinator.com/item?id=31512100


Doctors are not great at managing dysautonomia if they even know what it is. It’s a niche area. You’ll probably have to DIY research on it and ask for the meds you want.

Yup, ADHD medicine will activate the sympathetic nervous system and too much of that will cause dysautonomia.

If you have LongCovid and ADHD it’s reasonably likely you’re also hypermobile and have a condition called hypermobile Ehlers Danlos Syndrome (hEDS). It runs in families on an autosomal dominant basis. Doctors rarely know anything about hEDS either. The normals tests done by those that do have a 90% false negative rate.


I was actually tested for hEDS (amongst other things) in the past because my knees can do some funny tricks and I had some pain there. Turned out not to be EDS but instead the problem was caused by the kneecaps not tracking well - that was easily fixed by exercises.

You know your stuff well!


Thanks, in case you missed it though, 90% false negative means you could have received a negative on your test but it can easily be false. The normal tests are almost worthless, especially for men where testosterone helps a lot and reduces flexibility. People with hEDS also often have T4 -> T3 conversion problems and can benefit from supplemental T3. Endocrinologist tend not to know this which is strange because it’s kind of their job so it’s yet another thing you’ll have to figure out yourself. The proper way to check for hEDS is by using to rare comorbitities which co-occur in families with hEDS at a vastly higher rate, i.e. it’ll be almost impossible for a family to have this many seemingly independent things wrong with them by chance without a common hEDS cause. See https://ohtwist.com/about-eds/comorbidities for an extensive but by no means exhaustive list. One of the things not on the list is general and local anesthesia resistance. Dentists will not believe that you’re still in pain after using 2x the dose, or you make wake up under general.


Late response, apologies.

Saw the doctor today and brought this all to him. He has opened cases with and referred me to two specialists: one for the potential long covid symptoms, and one who will be taking another and more thorough look at the hypermobility and associated symptoms.

This information would have never reached me in such an actionable format if it weren't for your detailed comments. Thank you, I really appreciate it!


My pleasure, it’s a bit of a hobby for me. I hope you manage to find your answers.


I should really get tested for that. I have ADHD and my fingers can do weird crap and I have had 2 suffers and 1 person who has a similar condition tell me I should get checked for it... I just feel weird saying "hey doctor some people told me I might have weird bendy disease, can I have a specialist referral". Without any actual complaints I feel silly


I’ve been feeling that a lot since I caught Covid a few months back too, thanks for mentioning, now I can look it up in context


It's mentioned in most official resources that I've come across as a potential "long-covid" symptom, but I don't recall ever having seen it listed as one of the researched criteria - those seem mostly limited to just the (I suppose much more prevalent) cognitive impairments and exhaustion as in the linked article also.


It's definitely a symptom of COVID. I know someone who had COVID and one day they coughed suddenly, dropped their iPhone on the floor and since then even the iPhone's temperature sensor doesn't work anymore. This is how infectious and terrible COVID is, just one cough caused the loss of temperature sensation!


I was sick with covid for around five days 2 months ago. I had high fever, tiredness, pain on my body and coughing.

After I felt better I observed that I was feeling much more tired than I usually felt.

Now, after two months I feel a little better but not that much... Could this be related to my covid infection? Is there a way to improve my situation?

I did a normal check up but didn't get anything abnormal...


I am sorry that you have been burdened with this. Fatigue is indeed a known long-term symptom which is not uncommon after the “acute phase”.

In a tweet, here’s the start of a trail of very good information from solid research into these conditions: https://twitter.com/putrinolab/status/1557403364941496320


Very interesting info, thank you. It's nice to know that there's a measurable way to know if you've got long covid!


Another anecdote. I also experienced a long tail of symptoms - randomly getting tired, cough inability to write coherent paragraphs after getting COVID.

I found that exercising - starting with 10 min yoga / stretching and then slowly ramping up over 1-2 weeks - got me back to normal.


My experience is very similar to yours. COVID let me feeling very negative but build up to doing a good deal of cardio every day seem to have fixed it.


Thank you for the info and I'm glad that it gets better for you. I had stopped going to the gym because I wanted to rest and because of summer but I will definitely start it again (mainly low impact resistance training) in the following days and see how it works for me!


Funny, had the same happen to me. Thought maybe it was a coincidence, but getting back into my cardio routine eliminated the lingering fatigue I had after Covid, too.


My brother's heart and lung health suffered extensively after his second bout with COVID. O2 uptake is somewhat diminished, and resting heart rate is still very high. Walking up two flights of stairs requires a 5 to 10 minute sit down as he is completely winded by the time he gets to the top.

If any of that sounds familiar, you may want to get some more extensive tests done. I don't know what will come of it, pretty much the only thing that has helped my brother so far is a regular low dose of Benadryl. There's a bit of edgy research or internet driven anecdata (not sure which) that led him to try it, but it is better than nothing, at least.


regular low dose of Benadryl

That supposedly can cause dementia. Just FYI.


My symptoms are definitely not that significant. My O2 is > 98% (and never fell below even when I had the covid) and I can easily ascend stairs. I only feel that I am more tired than before the covid.


Additional anecdata: This is similar to what happened to me. I got covid earlier this year and had it bad for a week, had stuffiness and a possible sinus infection for a few weeks, and was tired all the time for a few weeks after that. The coughing lingered for a while too. Eventually I got back to normal just waiting it out (disclaimer: this is not a recommendation).


Glad you are better! How much time did it take to improve? I have heard of people that were feeling worse for months after their infection ...


My doc said i was fine too after having covid twice in 9 weeks.

I am still getting winded easily and while i was already out of shape i notice after riding a bike or being active for a full day i still feel bad the following day


Some avenues to consider/investigate (consult with your doctor before trying any treatment, but expect to hear "there's no reason to believe that will work" in many cases):

FLCCC I-RECOVER protocol: https://covid19criticalcare.com/covid-19-protocols/i-recover...

"Could tiny blood clots cause Long COVID's puzzling symptoms?" (article reports some people have had success with anti-coagulant therapies, but be especially careful with those): https://www.nature.com/articles/d41586-022-02286-7

Theory of Long COVID as Mast Cell Activation Syndrome (from one of the physicians who pioneered use of fluvoxamine in treatment): https://twitter.com/farid__jalali/status/1315060197988036608

From personal anecdata, I took a PQQ/CoQ10/NAC combo supplement recommended by the local supplements store after both of my two infections, and have never had any long-term symptoms. NAC in particular seems to show up often in the various recovery protocols that are floating around.


This is a nice summary.

Also add, that breaking microclots is the main goal not necessarily with anti-coagulants, they are similar but not the same. Anti fibrinogens are more useful in that post covid phase and it has been shown that live virus DOES live in those microclots so that's why antivirals (eg lysine, shown to bind to spike protein and also wide spectrum antiviral) to be used together with them.

Check out dr Gustavo Aguirre's work, he was months early every time.

https://www.researchgate.net/publication/344325326_COVID-19_...


Thank you very much for the information, I will research it more and try the supplements


This protocol is what solved it for me.


[flagged]


This is not true at all. Long covid, chronic fatigue, etc. are currently not understood, and have no known mechanisms or tests. There is nothing for doctors to identify as 'wrong' besides the subjective feeling of fatigue. This is not a matter of doctors making mistakes or not, this simply is beyond the limits of our current medical understanding. It definately sounds like the parent is suffering from long covid.


There are a lot of known disease mechanisms and tests. Just not known to most doctors who don’t keep up with the latest research, or even research in the last few decades. Also as it’s cross disciplinary it often gets placed in the too hard basket and passed on to some other specialty.


Or people could just be depressed/were not working out. All this talk in the news of long covid probably causes psychosomatic symptoms.


As a society, those who are able bodied are often so quick to dismiss illness that others are experiencing. A bit more humility would be a kinder way to approach the world. Just because there may be a few that abuse charity, does not negate the many more that are deserving.


I agreed with that. Social connections were significantly destroyed last year's. Overall fear agenda in news will not helps with mental helth either. Also vaccines harm with uknown effects.


> There is nothing for doctors to identify as 'wrong' besides the subjective feeling of fatigue.

Wrong [0]. Yes, it's complex, but doctors also know how to read, and they're honestly better at it (when it comes to medical texts) than you are.

Honestly it's just stupid how many people insist on self diagnosing long COVID. "Beyond the limits of our current medical understanding" is, unfortunately, idiocy. It's the exact same logic anti-vaxxers would use to refuse the vaccine. You're making the exact same mistake.

In general, you do not know more than your doctor. Stop pretending like you do. EVERYONE, both sides, just fucking stop.

[0] https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/...


If you are researching your chronic illness and contacting many docs you are going to know more from many docs who are experts in the topic then a random doctor who is only following orders and is going to have minimal information 2 years later when knowledge pushed itself through all bureaucracy. Why? Because more doctors who are focusing on the topic weigh more than a random doctor who has no clue.


I don't think you're really appreciating how similar your argument is to that of an anti-vaxxer.


Not knowing more than your doctor is not the same as your doctor knowing everything.

There are so many examples of diseases which are not currently completely understood, after decades of study. It's surprising that you think that's not true.


Doctors all too often think that if you are experiencing something that their measurements don't validate ... that you are not sick.

In my experience [6 weeks hospitalization; now chronic rare disease] it's that the doctors simply lack the knowledge, techniques, and instruments to identify the problem.

Rare diseases are an interesting thing. Individually, each rare disease is challenging to study, and hence poorly understood, hard to diagnose, etc. However, with thousands to choose from, getting a rare disease isn't all that rare. However, getting good care while having one might very well be.


Nothing is wrong based on given measurements taken, their limits these days, skill set of doctor evaluating them and so on. If your lung capacity or strength of some particular heart muscle degraded by 7.3% and your veins became 2.3% more susceptible to popping nobody will find it out.

My wife is a doctor, worked on emergencies too, and the amount of "we have no clue what is wrong with him" cases is staggering. Sure they can more or less treat symptoms but often that's it.

People often make a mistake (I used to make it too) and take medicine/healthcare as some rigid science keen to astronomy or mathematics where numbers don't lie and you always know where you are and why. Couldn't be further from truth these days.

Just a random sample from me personally - had broken my foot this June, and had plaster for a month. Have taken anti-coagulant medicine during it. Stopped when plaster went away as per doctor, within few days I've developed an ache in middle of calf, it was unlike any tiredness I had ever experienced there. But that fixation made my leg stiff like wooden plank, so I thought its just super tiredness of muscles when attempting to walk again. Wife mentioned that maaaaaybe it could be thrombosis, who knows. Went to hospital, they did blood tests which young doctor concluded were below threshold so I should stop taking medicine immediately and all is a-ok. Well, luckily I also went to venereologist who did ultrasound and voila - trombosis like hell there.

I could have died anytime during this, when it gets to lungs its rather quick process, brain is no fun neither. All this in biggest hospital in Switzerland.

Generally trust doctors and science. Don't trust them blindly. I guess most folks have some stories like this, albeit I hope with less risks.


Wow that was a close call, happy to see that got resolved and very scary that it almost wasn't picked up.


>long-term COVID symptoms are much more prevalent among women, adults under 65, Hispanics and Latinos, and non–college graduates than among other demographic groups.

Weird


ME/CFS is known to impact 2 women to every 1 man and auto immune conditions tend to follow that pattern due to the differences between men and women when it comes to immune response. As to the social economic factors its probably an ability to isolate from catching the virus, "key workers" were forced to catch it whereas college graduates will have had the ability to work from home and avoid it, many still are and certainly after vaccinations unlike manual workers.


“adults under 65, Hispanics and Latinos, and non–college graduates“ all correlate with things like "people doing blue-collar work"


Yeah, part of the consensus as far as I know is that the best way to avoid long covid is to basically be a absolute couch potato for a month post infection. which of course, you can't do if you have to back to a physical job as soon as soon as possible.


It is the first time I hear this and it can explain things. Do you have references?

One oddity I noticed is that among the people I know, the fittest and most physically active had the worst "mild" covid, which surprised me since it is well known that physical activity is good for immunity (up to a point). They tend to feel like shit for a week or two, and take weeks to months to get back to their pre-covid levels. I attributed it to some kind of bias: when you are lifting weights for instance, you can easily measure your fitness level by noting how much you are able to lift, a measure that couch potatoes don't have and therefore don't notice their weakness. But if you are saying that making efforts just after infection negatively and significantly affects recovery, that could be an explanation.

Also, there are so many articles along the lines of "I used to run marathons, now, with long covid, I can barely walk". It is rarely about "normal" people (in the US, that would be couch potatoes). Again I believe these cases are selected because the before/after contrast makes a better point, but again, "don't exercise after infection" could be an explanation.


I am unable to work for 18 months now. My covid infection was very mild and I was completely healthy before.


Please check my previous comments, there is way out for most long haulers.


This is NOT based on controlled studies:

>>Newly available data from the Household Pulse Survey—an experimental Census Bureau product launched at the start of the pandemic—provide the first large-scale, population-level detail on the prevalence of long COVID.2 Starting with the survey's June 2022 wave, respondents who report having had a diagnosed case of COVID are asked,

>>"Did you have any symptoms lasting 3 months or longer that you did not have prior to having coronavirus or COVID-19?"

We have no idea if it was COVID that was responsible for these symptoms (the most common of which is anxiety) or a response to COVID, like stress, or two weeks isolation after diagnosis, or the pandemic-related restrictions on social interaction.

The best evidence available suggests most cases of "long COVID" are misattribution:

https://jamanetwork.com/journals/jamainternalmedicine/fullar...


Those of us who had post-infectious disability were screaming about this since early 2020, unfortunately we were ignored in favor of "experts" who suggested we should let a virus with unknown long-term side effects rip through the country.

I've seen estimates as high as 4 million Americans out of work due to being disabled with Long Covid. Add some more people who now can't work because they are taking care of disabled family members.

To me, the only news story that really matters is that we're crippling 2 million+ working age Americans a year, many of them concentrated in very high need areas such as nursing. At this rate, hospitals and schools will functionally (if not officially) collapse within the next few years at most.

A country where you cannot go to the ER when you're sick because there is nobody there to work the ER, and a country where there are no teachers and they've had to bring out the national guard to merely babysit students, is a failed state.


> unfortunately we were ignored in favor of "experts" who suggested we should let a virus with unknown long-term side effects rip through the country.

What expert was suggesting that in 2020? As I recall, we shut down schools and restaurants and basically everything else we could for more than a year, except for very limited re-openings (e.g. outdoor dining, in the dead of winter) months later.

We couldn't shut down everything because people need grocery stores to get food!


Even then there was never any guarantee that shutting everything down would make an impact greater than the costs. The idea that all these lockdowns did anything meaningful at all is still an open question. The fact it is an open question means 1) it never should have been done and 2) its costs have to completely outweigh any benefit.

For the lockdowns and all the other nonsense you should see at least an order of magnitude difference between places that instituted them and those that didn’t. It shouldn’t require fancy statistics or expensive studies to confirm. It should be complete obvious to any reasonable person there was a very large difference.


There was and still is a large difference between otherwise similar areas/countries that did/didn’t take appropriate measures.


So there should be no debate right?


Q: How do you distinguish Long COVID from similar diseases like fibromyalgia?

https://www.mayoclinic.org/diseases-conditions/fibromyalgia/...


Long covid is mainly about microclotting and its 1000 downstream effects which can cause MANY different symptoms. Most times root cause is microclotting though, this can be shown by diagnostics as well.


34,423 subscribers:

https://old.reddit.com/r/covidlonghaulers/

I wonder if some % of the population can be extrapolated from that


[flagged]


People have studied post viral syndrome (I guess you could call it "long cold", though it's not limited to cold viruses) for a while, though covid has given rise to much more research.


There are strong genetic predispositions for LongCovid, most people can’t get it no matter how sick they get or how many times they get it. The fact that you’re in the majority group is not yet statistically significant.


I'm not sure it has been shown that you can't get it at later infections and anecdotally from friends and family (I know) that doesn't seem to be the case.

I'm also not sure if everyone notices changes if they are mild enough. I am fairly sure that a recent cold was COVID (because I infected my wife who lost her sense of taste) and it took me a while to notice my sense of smell is significantly worse. Too early to describe it as long COVID and certainly as annoyances go, this is as mild as it gets (if it is all there is).


More people do get it from multiple infections but it is still a minority and it seems to be the same genetic predispositions. I have hEDS which comes with ME/CFS, probably the best way to explain it is that it feels like burnout that doesn’t go away.

LongCovid has become an overloaded term with multiple PASC and acute organ damage being added. That’s slowly being fixed with PEM being the defining characteristic. Basically if you exercise as hard as you can a normal person can repeat in two days, a LongCovid/ME/CFS person cannot get close.


> There are strong genetic predispositions for LongCovid

Data? There are enough large genetic sample projects, such as 23andMe, that this is testable.


Here's some data that shows the strongest predictor of long covid is whether or not your parents are claiming long covid: https://boriquagato.substack.com/p/social-contagion-is-long-...

It's especially interesting because that predictor is stronger than whether or not anyone involved has ever tested positive for covid.


That link is just awful partisan politics. It’s unfortunate that LongCovid is getting swept up into the culture wars. Obviously genetic predispositions are inherited and will be a strong predictor. There is very little difference between ME/CFS and LC, many of these kids will have inherited ME/CFS but would not have been aware of it until awareness of LC picked up. In addition the vaccine is sufficient to cause LC in those predisposed to it. My pre-existing ME/CFS was made substantially worse due to the vaccine and I have not yet had covid. I do have extremely strong ACE2-AAbs which is a marker for LongCovid.


That is not what that link shows. Couldn't you find a link that at least tries to appear non-biased and doesn't descend into needless partisanship?


You’d think so, but doctors seem to be crazy bad at statistics which is astounding since it’s so important to what they do. But its easy to look at the instance of hypermobility and hEDS among LongCovid populations. They occur at rates of 40% to 30% in LC populations and they’re supposed to be rare conditions of 2% to 0.2%. The fact that something so basic and obvious could be repeatedly overlooked should give you and indication on what I think about doctors and medical researchers.


I'm glad that your 4 cases of COVID did not leave you with any debilitating side effects, but treating Long COVID so flippantly when it has ruined so many lives is a pretty ghoulish thing to do. I know people who are absolutely miserable because it left them with breathing/fatigue issues or cognitive disabilities - things that are known to be real and are observable via diagnostic tests.

Whataboutism like "has anyone studied Long Cold" really does no one any favors.


> Whataboutism like "has anyone studied Long Cold" really does no one any favors.

Which, you know, we've probably messed up by not studying post-viral syndromes more as we're accumulating more and more evidence that they're important to long-term health outcomes.

It just took COVID to fully convince us of this importance, because it does it so visibly at such a higher rate.

I believe half to 3/4 of "long covid" is anxiety and hypochondria. But that still leaves a pretty substantial "real" burden.


This has implications in the levels of coverage hospitals and insurance will have to extend to aftercare right? I wonder how long that will take to play out.


Maybe. I mean, in general, if you have a health plan you're covered for something whether it's a follow-on effect of something before or it's something new.


This is all very strange to me. Basically everyone I know have had Covid, but no one are reporting any “long Covid”. Same with the rest of the country. Pretty sure most of us have had Covid at this point, but very little reports of long term effects. I’m sure there’s some people who experience long term effects of Covid, much the same as many people will experience long term effects from f.ex influenza. It’s just something that doesn’t fit right in my head. From the start of the pandemic Covid has been reported as much more dangerous in the US than in many other countries. I would be interested in seeing a comparison of long Covid in the US and a country that is much more relaxed about the whole thing, perhaps one of the Scandinavian countries. There might be cultural issues and/or “pre-existing” health issues that effects how Covid works on the populace.


Our neighbor got long covid. Went from a very active, helpful and involved community member .. into a recluse who lost his job, has not been able to function let alone work for almost 2 years now, and combined with economic strain is now facing bankruptcy and a divorce. Dramatic and tragic outcome for something that is "just the flu". My dad's take on it? "bad genes". For those suffering, to hear such casual dismissal is just salt in the wound.


It's beyond disheartening that this disease has been so politicized.


https://covid19dataportal.se/dashboards/post_covid/

8500 recorded cases may not sound like much (for one possible diagnostic code of a few choices), but that's 0.1% of the population, and about half the number of people who died in Sweden. That's a pretty substantial amount of increased disability, especially if the risk of long COVID on each infection is close to independent (e.g. we keep accumulating people with long term effects at this kind of rate).

I have a family member affected; went from highly active to completely intolerant of exercise in her early 20's. Walking half a mile wipes her out for a few days.


> This is all very strange to me. Basically everyone I know have had Covid, but no one are reporting any “long Covid”.

Five of my teammates had it. One of them got long Covid.

> From the start of the pandemic Covid has been reported as much more dangerous in the US than in many other countries.

The US is a leader in the developed world when it comes to the venn diagram of co-morbidities, obesity, and poor access to healthcare for the people most afflicted by it.

It also has a generous helping of anti-collective-action public attitudes, horrible sick time policy, and a large fragment of the population that's been primed to believe all sorts of unscientific nonsense, due to a few decades of cynical and self-serving political messaging.

All of these factors are present in other countries, but to a lesser extent.


People quite often 'suffer in silence'.

Furthermore, I can assure you that Covid has been reported as just as dangerous outside the US as within. Indeed, it was within the US that it became most strongly politicised, spawning such dangerous nonsense as it is 'just the flu'.


Yeah? I need plenty of health care myself and I've been shat on nearly every time. My flippant attitude doesn't affect you nor anyone else. I just shit online like everyone else.


[flagged]


Did you know whole million you taking about? Generalisations won't helps here.


I don't.

I'm not.

I'm just posting my brain waste here like everyone else.


[flagged]


Vaccines are safe, have been administered and tested more than any form of medicine ever.

They save lives, both from death, and crippling complications.

Literally nothing you said is true, and I'm glad that misinformation spreading lunatics are being de-platformed.


I know a lot people who were injury by the vaccine. My cousin is on aircrew and he has mycardis now because of it. 20 years old. Only reason they detected it is because he had to get a flight physical. Most of the other people are women who had their periods messed up by it.


  > I know a lot people who were injury by the vaccine.
we are just trading anecdotes here, but i can can definitely say after taking the vaccine, especially the 3rd one, my long covid was relieved greatly and felt great afterwards... should i go around telling people to get the vaccine multiple times to cure long-covid based on that anecdote?

  > My cousin is on aircrew and he has mycardis now because of it. 20 years old. 
i won't deny your experience but let me just ask you this, whats the chance of getting myocarditis from real covid vs vaccine? which one is potentially more dangerous?


>whats the chance of getting myocarditis from real covid vs vaccine? which one is potentially more dangerous?

If you're less than 40, 2 doses of moderna will put you at 6x odds of myocarditis than natural infection. Or 3 doses of pfizer is slightly more than natural infection.


interesting, do you have any peer-reviewed studies for that?


Mycardis also happens from getting COVID-19, and the data shows it is more likely to happen and be more severe from an infection with Covid-19 than from the vaccine.

If you understand how the vaccine works, this makes sense, the vaccine simulates an infection with Covid-19, but gives your body the upper edge as the virus is not produced in it's full form and can't reproduce.

It's now believed the immune response is responsible for Mycardis, and that for COVID-19 infections the occurrence and effects are stronger because COVID-19 infects heart cells, and causes a stronger immune response than the vaccine.

When evaluating the vaccine you need to compare it against the risks of unvaccinated Covid-19 infections. In your lifetime you'll get one or the other, but if you look at all the known data, there's much more risks in an unvaccinated Covid-19 infection than the vaccines. That doesn't mean the vaccines are zero risk, but they seem the the right trade off if you consider the odds.

Edit: Also, only the lipid nanoparticle coating is unique to the mRNA vaccines, that means any side-effect caused by the vaccine is also caused by COVID, unless it's a result of the nanoparticle coating. From what I could find, it appears that only the allergic reaction is caused by the lipids, and the other known side-effects are all common with COVID as well and due to the body's immune response or the virus protein itself. And if you were curious, COVID also replicates using RNA, so both the vaccines and Covid also infect your cells with RNA.


> the data shows it is more likely to happen and be more severe from an infection with Covid-19 than from the vaccine.

No, not when stratified by age group. 2nd dose of moderna vaccine is 6x more likely to cause it for < 40 year olds [1]. If you stratify further (12-25) I suspect you'd find it's even worse. There's also a dose dependence where your chance of myocarditis increases with the number of doses [2], which not only corroborates [1] that the 2nd dose of Moderna is significantly higher risk, but that even 2nd dose of Pfizer puts is basically equal odds with the actual thing. And considering it's not either/or (i.e. the vaccines are not 100% effective at preventing your catching covid), this would mean that the vaccines are a net harm for younger age groups.

The dose dependence also seems to indicate some sort of cumulative effect (i.e. with enough infections or enough boosters, some vulnerable segment of the population will almost guaranteed to end up with myocarditis). Since we don't know how large this vulnerable segment is (perhaps somehow related to long-covid susceptibility), it's irresponsible to blindly recommend or mandate boosters for everyone.

> the vaccine simulates an infection with Covid-19, but gives your body the upper edge as the virus is not produced in it's full form and can't reproduce.

You could alternatively hypothesize that when acquired "naturally" the virus (and whatever proteins it ends up producing) don't immediately go into systemic circulation (instead it needs to progress from respiratory downwards), and the body has time to mount an attack before it hits systemic circulation.

[1] https://newsroom.heart.org/news/myocarditis-risk-significant...

[2] https://vinayprasadmdmph.substack.com/p/uk-now-reports-myoca...


> Among men younger than age 40, the risk of infection-associated myocarditis was higher compared to the risk of vaccine-associated myocarditis: 16 extra cases associated with having infection before vaccination, with the only exception of a second dose of Moderna vaccine

Fair enough, it seems two dose moderna for men younger than 40 has higher risk of mycardis.

> this would mean that the vaccines are a net harm for younger age groups

I'm not sure that's the right conclusion. Appart for men younger than 40 with two dose moderna, your link shows a higher risk of mycardis from infection.

Also that study didn't have data about the outcome, but some of the other datasets I've seen showed that mycardis induced from COVID-19 in unvaccinated is often worse.

Personally, either or, I find overall the risk of Mycardis seems on par between vaccines and Covid-19, even if in some circumstances one can be higher than the other, they both remain low and close to each other.

I personally wouldn't worry about Mycardis in that case, but I'd focus on other side-effects instead that are more troubling, such as the long COVID related ones discussed here.

I'm not saying I think men under 40 benefit much from the vaccine. And in fact I think you bring a great point in that most of the advice is generalized and focused on at risk individuals, and I too would like if more nuance was provided, that took each individual context into account, age, race, sex, pre-existing conditions, weight, exposure, various COVID strain, etc. My main point was that you have to compare your own risk of getting Covid-19 unvaccinated against that of getting the vaccine, you can't look at each on their own, they both have more risk than not getting vaccinated and not getting COVID, but you must choose which you'd rather risk having first.


Unfortunately both long covid and vaccine side-effects are downplayed.


[flagged]


Wow, what a great idea!

Also maybe you could have been forced to meet my grandfather who languished and died in an old folks home alone because nobody was allowed to visit him. Or maybe you could have had a phone call with my wife’s old school friend before she committed suicide during the pandemic because she had mental health issues that were exacerbated by forced isolation and took her over the edge.

At least they didn’t catch Covid though. Thank goodness.


- and didn't spread it to many other vulnerable people.

No mitigations are going to be entirely or even largely consequence free. It is a balance of harms. Do nothing was never an option, we should have been better at what we did do, in terms of effectiveness against COVID and also in reducing other harms.

Of course, the sooner and the more completely the virus is controlled (e.g. China) the sooner normal life can resume.


The virus will be around forever. I would rather take my chances with the virus than live in an authoritarian shithole like China. Remember Tiananmen Square?


The data showing the difference between percentage of college graduates and noncollege graduates who believe they have long COVID seems to point to a placebo effect. I don't see why college grads and non-college grads would have any reason to be affected differently by a virus.


Far too quick. Of course, there isn't a direct causal connection between college degrees and severity of Covid, but there are huge average differences between more and less educated individuals, including lots of health related outcomes. https://www.economist.com/graphic-detail/2021/03/17/educated... (chosen basically at random, basically any relevant google search will get you many articles saying similar things).

It's also unbelievable that these groups don't differ in frequency of having Covid, vaccination rates, likelihood of having had Covid in 2020 vs. post vaccination, etc. Since we know vaccination has some protective effect against long-covid, that's another factor.

This doesn't mean these reports reflect underlying reality permanently (maybe a desk jockey reports disability differently than someone with a physically demanding job, maybe other factors make people less likely to report). But there are plenty of ways education can predict outcomes that aren't just reporting bias.


Probably because they were able to work remotely at a higher rate and thus fewer were actually infected. Being diagnosed with COVID was not a prerequisite for this study.


People with more (or later) education will often have better outcomes for things like Alzheimer’s Disease. It’s not unreasonable to think that education may have a protective role.


One theory is that educated people compensate better for decline on cognitive tests, basically by “muscling through it”. I’ve heard it doesn’t change the overall course of the disease much but it does make the decline less noticeable in the early stages.


I agree. Research papers and books (can currently think of one[1]) mention that there is more nicotine users among less-educated.

It's not far-fetched to assume that this substance is not atypical and educated people make in general more health-conscious choices.

[1] https://moleculeofmore.com/


Nicotine itself is not particularly dangerous and smoking cigarettes with no nicotine would be just as bad for your lungs. The main with it is the addiction however there is bo clear link between long term use of nicotine itself and any significantly negative health outcomes.


I would argue that education enables a lifestyle that is protective, rather than education itself.


Education is also self selected, so it likely representative of other choices as well.


It just isn’t though. Opportunity is not doled out equally. Yes, everyone has the chance to be educated. But some schools are better, some families more supportive etc. And certainly there are exceptions that defy their environment but they are exceptions.


That doesn’t distract from the fact that many that have the opportunity chose not seek or continue higher education. This is especially true post collage.


No, the data does not show placebo effect.

Reason: College grads are more likely to get vaccinated against COVID than non-grads. Leading to a reduction in symptom severity and perhaps long covid.

https://healthpolicy.usc.edu/evidence-base/education-is-now-...


But there could be other causes. You are operating under the default assumption long COVID must exist. But non-grads on average are poorer, work in different environments, and have different health (i.e. obesity and diabetes) than grads. There could be any number of underlying health conditions causing brain fog and other long COVID symptoms. Obesity and diabetes are known to impact brain function and are correlated with Alzheimer's. Sedentary lifestyles and poor diet can also lead to low energy.

The reason I say placebo is because any of these pre-existing conditions could be blamed on long COVID. Think about it: you don't know much about diseases, you see CNN/Fox News/MSNBC talking about long COVID. You think to yourself, hey I've got those symptoms! You blame long COVID, even though the underlying cause could have been obesity, diabetes, sedentary lifestyle, diet, etc.

We know obesity is harmful yet the fat acceptance movement exists. Do you think those people are going to blame their symptoms on their obesity?


Obesity among college graduates is relatively low in aggregate, and obesity is associated with LC.


College graduates may be less likely to be exposed to larger quantities of COVID molecules (e.g. driving via car, vs taking the subway, or any other number of possibilities), or perhaps they had better treatment of their COVID due to their financial capabilities.


There are strong selection criteria biases at work here; this does not indicate psychosomatic.


I think you are right, but I don't think placebo necessarily means psychosomatic. Does it?


If a placebo is effective it’s presumed to psychosomatic as there have been no underlying medical changes. In this case I presumed that the term ‘placebo’ was being used incorrectly and what was meant was psychosomatic.


That is certainly an explanation. But I'm large studies like this, it seems as likely it was just an uncontrolled variable. Right?


I’m unsure as to what you mean. There most certainly are lots of uncontrolled variables. I’d be highly surprised if this study wasn’t flawed in a number of material ways.


I'm just saying that we don't have to jump to psychosomatic to explain why a placebo may show identical results to a treatment. There are plenty of ways that can happen.


Education levels tracked the acceptance of masking and vaccination, and the political divide that has emerged from Trump.

I think highly educated people are often simply indoctrinated with facts and beliefs rather than trained to be intelligent and knowledgeable.


Education is about using intelligence not gaining it. That said, in practice knowledge can be more useful than intelligence if the circumstances presented fit the available knowledge well.


There is now fairly substantial evidence that COVID can cause your brain to physically shrink. Maybe some people experience a placebo effect, but long COVID is clearly a real, physical disease at this point.


I wonder how much of the covid related long term cognitive impairment is due to the marked lockdown induced increase in alcohol consumption[1]. I’m assuming that if deaths increased other than death bad outcomes probably increased too.

Edit: I see nothing in the submission showing there’s no substance abuse effect, clearly or otherwise.

[1] https://www.niaaa.nih.gov/news-events/research-update/deaths...


No the data clearly shows this is independent of substance use.




Guidelines | FAQ | Lists | API | Security | Legal | Apply to YC | Contact

Search: