Nearly half of Covid patients haven’t fully recovered months later, study finds
nytimes.com
nytimes.com
> We demonstrate an absence of association between symptom burden and radiographic or biochemical abnormality. We suggest that the phenomenon of Long-COVID may not be directly attributable to the effect of SARS-CoV-2, but rather the neuropsychiatric insults may play a greater role in its aetiology.
There was a similar phenomenon after 9-11 and gulf war:
> Similar post-traumatic syndromes, such as Gulf War Illness and post-9/11 syndrome, describe the occurrence of both physical and psychological symptoms in a similar pattern to what is being observed in Long-COVID.
https://sci-hub.st/https://pubmed.ncbi.nlm.nih.gov/33569660/
"Breathlessness, palpitations and confusion or difficulty concentrating" seem to be the primary symptoms according to NYTimes but I'm curious if they've found any 'radiographic or biochemical abnormality' in this case... or whether that even matters. COVID was obviously a very serious and traumatic occurrence, especially for people who got a severe case.
This is consistent with ME/CFS, which the WHO classifies as a disorder of the nervous system. There are no known diagnostic markers for ME/CFS.
I had a girlfriend who got ME/CFS. Before she could race me up a 1000 ft hill after she could hardly walk. That change happened in a few days as a result of an infection, and lasted years. Definitely wasn't psychological.
No diagnostic markers have been found (after many decades of seeking them) because CFS is a not a physiological illness. Countless millions of dollars and hundreds if not thousands of doctors and researchers have chased after the holy grail of reliable diagnostic markers for CFS to absolutely no avail because there is nothing to find.
Instead, various MRI studies have shown consistent brain abnormalities in CFS patients. Recently, low dose Abilify (a neurotransmitter modulator typically used for various psychological disorders) has shown some usefulness in CFS patients. And a drug called CT38 that targets receptors involved in managing the stress response has also produced strong results in a small group of CFS patients:
> CT38, a proprietary peptide agonist selective for Corticotropin-Releasing Factor Receptor Type 2 (CRFR2), one of two receptors, or pathways, that control serotonin in the limbic system and cord. In response to any threat to homeostasis, corticotropin-releasing factor (CRF) acts via CRFR1 and CRFR2 to control serotonin. When the threat subsides, these receptors return to their normal configuration – unless permanently upregulated by an intense or prolonged threat. This then dysregulates serotonin, leading to the shared symptoms of many chronic diseases. [1]
> “Once the CRHR2 receptor gets switched on, it's as if it is permanently switched on. When that happens, it has downstream effects on the limbic system and serotonin system.” Then, any stressor the person is exposed to – including exercise, heat or bright lights – is interpreted as being a major stressor. Other potential stressors are mental trauma, physical trauma, viruses and toxins. [1]
And what I've noted is just a small sample of the surfeit of evidence that CFS is a neurological disorder. Unfortunately, the community of CFS patients is more than a little deranged and they're still gunning for a simple answer that doesn't make them feel uncomfortable and that's more amenable to some magic pill solution.
[1] https://www.biospace.com/article/a-different-pathway-to-solv...
https://www.nature.com/articles/s41467-022-33415-5
One thing that immediately leaps out to me is that the profile of "symptoms" is broadly similar between "never infected" and "symptomatic infected" groups, but completely different (much lower across the board) for "asymptomatic infected":
https://www.nature.com/articles/s41467-022-33415-5/tables/2
There does seem to be elevation vs. controls for certain symptoms (including a few that are mechanistically believable, such as shortness of breath), but because this is self-reported data, it's still hopelessly biased. People who self-identify as sick are going to be more likely to report symptoms than those who do not...which is probably why we see the much lower rates of "long covid" symptoms in the asymptomatic infection group.
At the very least, this should make you question the idea of "long covid" after asymptomatic infection. Based on this data, "long covid" is closer to the symptom profile seen in people who were never infected at all than it is to the symptom profile of people who knew they were infected, but didn't have primary illness.
Got covid in the spring, lost my sense of taste, but it started gradually coming back after about six months.
Got it again a month ago, lost my senses of smell and taste, also have a persistent cough, persistent tinnitus, tiredness, and more frequent migraines.
Either my friends and family are unduly healthy, or there's maybe something questionable about the "half".
If I flipped a coin 21 times and it only came up tails once, I wouldn't believe it was a fair coin...
That doesn't mean they hadn't recovered enough to work or socialize a bit again after much less time. But they still had problems like for example bouts of weakness well over a month later.
This kind of long term Symptoms aren't that rare for more serve virus infections in general. They are unusual common with COVID but other viruses can cause that, too. It's just that many societies force people to treat this as if they are fine and power through it, maybe by using non-prescription drugs. While I hadn't(1) had COVID yet I went through similar situations twice in my live in the past. Strong virus infection, fast "recovery" to a point I could go back to school but slightly over a month until I was actually fully recovered with funny experiences like nearly passing out when doing sport in a amount which I had been trivially able to do before the virus infection.
(1): At least no positive test.
Anyway the point I want to make is:
- fully recovered can mean many things
- it's not a fundamentally new thing
- but due to high covid rates and being relatively more likely with covid, it has become a problem.
- It's a problem even if the number is much less then half depending on the definitions you use for fully recovered and of what you take half.
I think for useful research they should look at people say whose heart rate goes to 120 when they try standing or some such criteria that normal people don't fit. Feel a bit tired/down is something that could apply to anyone really. I think that may be what's leading to the "nearly half" in the title.
I had a single dose of Pfizer from about 3 months before. I never got a second dose. Kids all breezed through it.
The first month afterward required a lot of pushing and experimenting to get my body to respond to working out. Stuff like walking for extended periods of time was easy, but anything that got my HR into Zone 3 and above was taxing. After that month, things got progressively easier.
I also made a lot of other changes: diet improved tremendously, I lost 30+ pounds, and I feel like a completely different person now than before.
The only other people I know personally who got long covid had gotten 2 doses but had other issues like being overweight or having a horrible diet.
I used to be very active, but seem unable to get back to shape more than one year after lockdown ended and gyms reopened.
I only got a very mild Covid this past January.
During the lockdowns I was less sedentary than before, since I had more time to take long daily walks and I also did a ton of physical work building a house with the time saved from commuting. Still, after I finally got COVID a few months ago, I've felt more fatigued than normal months after testing negative. Walking up the stairs suddenly got more tiring more often.
The bike paths were absolutely packed around me when people couldn’t do discretionary shopping or go to restaurants or the movies.
Probably long covid.
Anecdotally I was having a bunch of bizarre symptoms this summer and thought I had long Covid too, and ended up in the hospital due to heart complications which turned out to be from Lyme. They treated me with the standard antibiotics and I’ve been pretty much fine since then.
I've not even a health anxiety person. At this point I'm sort of thinking "it is what it is". I'll continue to live life. But the only thing there really is to point to is either covid itself, or some vaccine response.
Your symptom cluster is very similar to me since a long long time before Covid.
I've seen perfectly healthy people—before and after COVID—who literally had their life changed due to a completely random infection or issue. People who went deaf after having a baby or developed T1 diabetes. Some people were "perfectly healthy".
But some people seemed healthy until they weren't. One day, their eating/drinking/smoking habits caught up with them due to age or complications from things they didn't even realize were health problems until it suddenly became an issue.
I am not a doctor... but you mentioned weightlifting... the fatigue and neck pain could be a pinched nerve? Perhaps an injury that manifested itself after a viral infection? Have you seen a physiotherapist? I finally saw one about arm pain and it changed my life.
Well, hoping you find some answers, then.
I took a lot of tests and tried a lot of things and made no progress with doctors for about 2 years, until I tried doing a more aggressive version of the paleo diet (even avoiding most fruits), and now I'm making significant progress, slowly ramping up my workouts and the amount of stress my body can take. I'm also taking supplements like Zinc and some Asian herbs that are intended to raise testosterone, which I understand to reduce cortisol/the stress response. I'm also meditating most days and taking a cold shower daily. I think the diet is the biggest factor though -- whenever I accidentally eat a high-GI meal, I feel the symptoms hit immediately.
Neuffer's central thesis in ANS Rewire is that CFS is a disorder of the autonomic nervous system. And that's more or less in line with the WHO, which classifies CFS as a disorder of the nervous system generally.
ANS Rewire explains what you're observing with high GI foods too: insulin spikes are interpreted as a stressor by an overreactive ANS and sugar regulation in a CFS body appears to be compromised primarily because cortisol is an insulin suppressant. He recommends dietary modifications of the kind you're pursuing.
Mostly it sounds like you're doing the right stuff already. If you want to recover faster, then there is one strategy that is essential: find ways to quickly and effectively relax yourself every time your nervous system produces an acute response to a stressor (usually in the form of intensified fatigue or brain fog). The most effective for me was to rotate through a large series of relaxing visualizations. So, for example, imagine yourself on a beach in the Bahamas. You do need to rotate visualizations because there's a tendency to become accustomed to any particular one. It sounds absurd, but it does work, so long as you're consistent. Takes about 1-2 months to start noticing major improvements. There's a fairly complete list of relaxation techniques you can try here: https://www.mayoclinic.org/healthy-lifestyle/stress-manageme....
Note that Dan Neuffer's 'REWIRE' technique works along these lines, but he doesn't recommend a visualization strategy, which I found to be far more effective than what he proposes. The principle is consistent though: the nervous system will stop overreacting to stressors if it is retrained out of the pattern. The most effective way to do that is to become deeply relaxed as often as possible throughout the day and especially when you sense that nervous system activation is spiking.
When you emerge from the CFS state, it will happen rather suddenly. There's an excellent description of the recovery pattern here: https://drmyhill.co.uk/wiki/CFS_-_Catastrophe_theory:_why_we.... (Note that the rest of this website is a mixed bag, with a lot of things I wouldn't endorse; that post was written by a guest author)
I dedicate a significant portion of my life to managing the symptoms and optimizing my health now, which is somewhat working, but also annoying. It would be cool for it to just go away completely as you mentioned.
Did you see the sibling comment about stellate ganglion block shot? Not sure if my symptoms are bad enough at this point to risk messing with such a delicate area, but there is certainly a temptation to just be "cured."
I had a few false starts before I figured out that most of the strategies typically proposed are superfluous. It was hard to sustain multiple habits (CFS itself makes it much more difficult) and I suspect that’s a common failure mode in recovery.
So, I pared back my approach to just 4 things that I regarded as essential: visualizations during the day as needed and as described, walking outside 3-4 times per week, meditation in the mornings (used the Waking Up app), and intense sleep hygiene (including using visualizations and other techniques to become deeply relaxed right before falling asleep).
The sleep part was critical for me personally and I suspect would be for most people with CFS. At one point in my journey, I did a polysomnography and discovered that my sleep architecture is highly disordered (no surprise in CFS). In particular, the study showed I had an astounding zero percent deep sleep. My theory is that chronic nervous system activation prevents brain waves from slowing down to a low enough frequency to enter the deepest (and most restorative) stages of sleep. If you’ve ever had a random ‘good day’, then you’ve observed the difference and probably wondered why you suddenly felt so much better and how you might sustain that. In fact, you can look at r/CFS and you’ll see countless stories of people frustrated at suddenly feeling better and not understanding why. The answer, in my view, lies in how relaxed you happen to be while sleeping.
I didn’t have to modify my diet or do anything else to get better. Took about 2 months to start breaking out of the CFS state and 2 more months to become consistently stable. Things keep improving, as you maintain what you’re doing. And you’ll recover roughly in step with how much you do to target the nervous system (and inflammation) and how often you do it. A good model for what you need to do is weaken and override neural patterns that have been reinforced for a long time. It doesn’t happen all at once.
I would also advise limiting activity that causes overactivation of your nervous system. You shouldn’t need to go out of your way to create situations to practice what I call ‘counter-relaxation’. You’ll also very naturally want to do much more as you start to get better, so you can expand your activity slowly as you regain energy.
> I intend to get around to publishing extensively on the matter at some point.
Please post on HN when you do!
It sounds like your symptoms were a bit different (even between long covid sufferers, they seem to vary greatly), but I definitely understand the difficulty in not "overdoing it" whenever you feel a better than usual. Did you try yoga or other progressive exercises, or did you avoid those stressors until you felt better?
Currently, I work out about to my limit of where I get some slight and brief symptoms, and that limit is slowly increasing. I've attempted months of taking it super easy, which brought on different forms of the same symptoms (the fight or flight response, altered breathing and heart rate and brain fog), so it seemed like I might as well just get the exercise.
But ever since recovering from Covid I've had this tightness/squirming feeling around my stomach/gut at night, and it really hinders my sleep. I've been to the doctor several times. Nothing's wrong with my heart, and nothing major with my gut either; he can't figure out what it is. At this point I'm starting to wonder whether it's psychosomatic, though I'm not an anxious person, and wasn't terribly worried about Covid. The timing definitely coincides with my recovery from Covid. I'm hoping it just goes away eventually...
I am not advertising it, but I certainly don't regret looking into alternative self-therapies with supplements (vitamins, minerals, probiotics, antioxidants) during recovering from Covid. In my case, the moderate CFS that I had for years before Covid miraculously mostly disappeared as well.
Some of the reddit anecdotes are pretty amazing.
73% of Americans are overweight or obese.
Everyone operating normally since then, my kids play a lot of sports at a high level. I coach, exercise, etc, while not in my best shape ever, it’s mostly cause of limited time.
No vaccines, won’t ever get them.
Never had anything like this before that one time being sick other than seasonal bronchitis a few years in a row about a decade ago.
Only other thing I can thing of is allergies but I've now lived in multiple places during the past 2 years, visited different areas, and it still recurs.
Unless you can contract trace yourself to someone who worked in Wuhan (or you worked in China then) this is fantastically unlikely and makes you a Unicorn.
It is thousands of times more likely that you got one of the numerous flu like viruses going around in Jan 2020, and post-viral sequalae from viruses is not unique to SARS-CoV-2.
And you can have allergies to so many things that it is impossible to escape them. I have allergies to dust mites, grass, mold, Birch and a few East Coast trees. Without testing I wouldn't be able to deduce what I was allergic to at all.
However, I did work with engineers during that time who had recently traveled from Wuhan and seen family there. I also passed through both SFO and SEA airports at very busy times at the end of December/beginning of January, and had been in LA at tourist areas with tour buses full of people.
So it may not be incredibly likely, but there's a chance.
And again, could be allergies, but I'm not sure they'd suddenly start being this much of a problem at my age (late 20's/early 30's). But I'm no expert.
Did those engineers get sick, before you were symptomatic, and had you had close contact with them (meetings, dinners, etc)? And did you have the characteristic loss of taste/smell? If you can answer 'yes' to all of those (including that they were definitely sick with the correct timeframe) then you've got at least a better case than most people who got sick in Jan 2020. But even given someone who had visited Wuhan in early Jan and had respiratory symptoms, it is more likely that it wasn't SARS-CoV-2 and it was just normal influenza/cold-like viruses.
And you can definitely have allergies get worse as you age, late 20s is probably when mine got bad, and they've gotten worse over time and I get sore throats now and they feel nearly like a cold. My Birch allergy got really noticeable sometime in the last 10 years.
Get an allergy test, though, and see.
The first two times were sore throat with congestion. The last time was sore throat with congestion and sore joints for a day with fever. All symptoms except for congestion lasted for a day, and congestion lasted for a week. Annoying but nothing more than a bad cold for me.
That still looks like a pretty poor response rate.
> People with previous symptomatic Covid infections reported certain persistent symptoms, such as breathlessness, palpitations and _confusion_ or _difficulty concentrating_, at a rate roughly three times as high as uninfected people in surveys from six to 18 months later, the study found.
Also:
> Women, older people and those living in poorer areas also faced more serious aftereffects from an infection.
TLDR people more likely to be depressed were find to be depressed and someone tries to claim it's thanks to COVID infection. /facepalm
Strong argument for the protective nature of the COVID vaccines. Although the virus certainly appears less damaging now in 2022 as opposed to when it first appeared.
That was not Hong Kong's experience with Omicron when it hit a population of unvaccinated older people and their per capita death rate soared up to one of the highest in the world.
The "weak" omicron effect is probably due to preexisting natural immunity and vaccination. South Africa where Omicron originated had a youthful population and high levels of natural immunity. Most of the developed world had a mix of natural immunity and high levels of vaccination (particularly in the elderly). Hong Kong had neither and Omicron still tore it up.
But it was partially psychological: whether that partial was 10% or 50% or 80%, you can judge.
The acute phase lasted two weeks. I had a very strong mix of what was a bad cold and allergy symptoms, progressing to a dry cough from a very bad wet cough. I also had dizziness, forgetfulness, and at one point everything in the world smelled of orange for a week. I had terrible, terrible health care, I was given steroids that spiked my resting heart rate to 110-120 (normally 55-60), told nonsense advice ranging from "it's just a cold" to "here's a Z-PAC in case it gets worse" (I never took it), and of course I never qualified for the antivirals for reasons best left not mentioned here without causing a political argument, the part that makes me the angriest of all.
Anyway, after that for two months I had shortness of breath, strange sleep issues, dizziness, and chest tightness. I went to see a lung specialist in a long covid specialty part of a famous hospital chain in the first two weeks of that period. I was told I was at risk for mitochondrial dysfunction, that I should never do strength training again, that some of the other patients became crippled after one year. That POTS was a risk, etc. That athletes have the highest risk for permanent disablement from long covid.
I became distraught, and during this time had some of the darkest thoughts of my life. Can't exercise? Risk for POTS? Disabled? That's it for me. I had dark circles under my eyes and fell into a sort of depression. Dysautonomia is the generalized name for the disorder. Anxiety was triggered, and it played its role.
I remember I'd taken an Uber at one point who told me that the vaccine gave him symptoms, and he described all the same stuff as me: shortness of breath, waking up at night sweating randomly, dizziness. He was wide-eyed as I explained long covid / dysautonomia. He had had covid prior to the vaccine, and I told him that was the cause.
Then one day I went back to the specialist and I brought with me a printout of an endoscopy I'd done a few months prior that showed esophageal inflammation and a GERD diagnosis. I also had a detailed printout of exercise attempts, and notes and dates for what I experienced that night, the next day and the day after, rating the shortness of breath, sleep disturbances, etc. I did a stress test with a cardiologist that showed I was exceeding the markers at every level, was cleared. After that both cleared me for exercise.
Overnight my mood change, my physical body felt more healed, and I went full speed ahead in revamping my exercise regimen.
Literally everything was fine, then.
Well. This weekend I was exposed to covid and today, day 4, I'm testing negative but experiencing some cold symptoms and some chest congestion.
How much of the above is in my head versus actual is open to debate. I honestly don't know the answer.
But sometimes I wonder, if no one ever told me anything about covid, and ignorance were bliss, how much healthier I'd probably be and how much better the last six months would have been!
And people wonder why I don't blow it off. I've yet to get it, and I don't want to.
I'm sorry about your dad, but let's not exaggerate based on personal anecdotes. The stories that get upvoted are the ones that scare people.
People aren't just upvoting covid porn.
Your original comment - sharing your own anecdote - would’ve been better without the second paragraph.
If your anecdote is "boring" or a more normal representation, why share?
It seems like you want to fight to downplay the effects of covid, which is fine, but your approach is totally off.
Because if we don't, the only people who will share will be the ones with scary stories.
But indeed...why share any anecdote at all? They're pointless, except when used (as they usually are) to trigger emotions.
I'm saying that there's a tendency for people to amplify the emotional stories, and ignore the boring ones.
The point is to provide a neutral voice in contrast to the fearful one.
I lost two friends to COVID. That weighs on me a hell of a lot more than the knowledge that I didn't lose others. It's going to influence every discussion on this forever. Because they died.
Yea it does when it's used as a rhetorical blunt object to bash dissent in every conversation when people speak about the egregious & fruitless authoritarianism that capitalized on the exaggerated risks of covid. There is a very specific risk profile and treating everyone who's at very low risk as though they're on the opposite end of the spectrum is simply misinformed.
There are people who are vulnerable to covid, that has always been the case, but they are a very small minority of people. And insofar as pretty much every heavy-handed intervention failed to protect those people, and also inflicted a massive fruitless cost on society (that oddly enough puts the vulnerable at even more risk because of the resulting societal dysfunction and disorder), yea you better believe people should be pushing back on using the dead as a thought-terminating cliche. It's a way to scapegoat the rest of society for not obsessively masking (as though this ever helped adequately, the evidence is still weak and in real-life most people either don't use the right mask or use the mask incorrectly) or taking a vaccine that doesn't even prevent transmission.
You then willingly entered the thread with "I'm sorry about your dad, but let's not exaggerate based on personal anecdotes." Who accuses someone of exaggerating a death?
Stop making this about your anticovid cause... you received a negative reaction because you were being highly insensitive.
Person 2: "well, hold on now. Things still seem okay to me."
Person 1: "why are you minimizing it?!?"
I'm not saying that OP isn't telling the truth. I'm not even saying that their story is less representative than mine. I'm just saying that my boring story also exists, and we shouldn't fixate on (i.e. "emphasize") the emotional stories because they're emotional.
Then you say "It still doesn't give them carte blanche to exaggerate or emphasize scary anecdotes at the expense of boring ones." In what way is the post made by classichasclass at the expense of other anecdotes? It makes absolutely no sense.
This subthread is now filled with comments taking an anecdote from a complete stranger -- someone they don't know and whose story they cannot possibly verify -- and attempting to shame/attack/villainize anyone who presents an alternative to that narrative. One anecdote is good, but the other one is bad. Why?
It's just another form of argumentum ad misericordiam (appeal to pity): if you discount the emotional narrative, you must be a heartless person, unworthy of serious consideration.
You assume the OP was telling the truth, and therefore, we should all defer to the emotional anecdote.
What if they're not? How would you know?
The only difference between us is that I don't make that assumption. Giving undue credence to anecdotes is a form of exaggeration.
But as I see it, relative to nowadays, the analogy would be that people are arguing that no one should ever allowed to swim in the ocean or should be wearing a life vest 24/7, even on ground.
What’s exactly your point unless you’re trying to say that your anecdote is better than theirs? Have you considered that it may just be your survivor bias talking and just maybe you are just plan lucky?
I’ve lost family members covid! Have friends who did too.
That's a problem.
For whatever it's worth, though...the fact that dozens of people I know have had it and are fine isn't "luck".
Its like expecting 4chan comments on HN.
Calling bullshit.
https://www.nature.com/articles/d41586-022-01589-z
Anybody who lost their sense of taste or smell took months to recover that. Loss of smell or taste is almost 50% for Covid prior to Omicron. Even with Omicron, it's about 20%.
And yet, in more anecdata, everyone I know who had taste issues recovered them in much less than a month with no long-term impacts.
I guess the point is anecdotes are worthless.
[1] https://www.news.com.au/technology/science/human-body/pfizer...
Almost no one has gotten covid of any of my friends/coworkers. I've been casual as can be, never touching a hand wash squirter, going out in SF outdoor and indoor dining if they didn't check, and haven't been sick since 2018 or early 2019. Before that, I was actually one of those sickness manchilds that honestly twice a year would almost be unable to function for an entire week.
I'm about starting to think people can will themselves into not getting sick, and maybe will themselves into it.
My friends don't believe in it, and I and others haven't sniffled in 2 years.
Downvote away for personal experiences Im sure.
That makes sense. All the COVID prevention steps everyone took would prevent other diseases as well.
> I've been casual as can be, never touching a hand wash squirter, going out in SF outdoor and indoor dining if they didn't check,
I don't know why people are proud about not washing their hands. That was gross pre-Covid too.
> Almost no one has gotten covid of any of my friends/coworkers
Alternatively, you and your friends are fairly young, caught it, were somewhat asymptomatic, and spread it to everyone you met. After all, you don't seem to have tested at all.
Other note, I have many older coworkers. I'm not really in tech, although I have a decent Saas outside of work.
Not all roads are the same. And IMO the incidence and severity of covid has been drastically exaggerated.
I used to joke that if you offered me $100k to go get covid, I wouldn't really know how to go get it.