Not sure about the quality of these findings - especially the uniqueness to covid19.
My Dad contracted SARS (Swine Flu) 2 years ago and was knocked out for 2-3 weeks and needed at least 2 month until full recovery.
Also, I contracted common colds 4-5 times over the last years every year due to my 3 year old going to the daycare. I got a chronic sinusitis out of that. Am I long-hauler now?
So if we were having a debate about net neutrality and we started talking about the telephone or cable company as an analogy, that would be bad faith? When people are so quick to yell “bad faith” or “whataboutism” it really highlights the fact that they don’t have a valid counter argument.
Because the devil is in the details. Covid != Rhinovirus. If you asked why HIV is treated differently than crabs you'd get a similar response. Not only is the severity different, they are different diseases and so have different effects.
Phrases like "Stump Experts" and "Puzzling Persistence" are chosen to imply that this is something unprecedented and scary.
This piece is mostly about the heart effects of COVID-19, but it hammers home the same point - that none of these effects are particularly unusual or surprising, they're just occurring at a massively larger scale, with massively more news coverage, than before:
> Adults with severe illness who spend weeks in intensive care, often intubated, can experience long-lasting symptoms, but that’s not unique to patients with COVID-19. What’s unusual about the long haulers is that many initially had mild to moderate symptoms that didn’t require lengthy hospitalization—if any—let alone intensive care.
“Most of the patients that I see who are suffering from [post–COVID-19] syndrome were not hospitalized,” Jessica Dine, MD, a pulmonary specialist at the University of Pennsylvania Perelman School of Medicine, said in an interview. “They were pretty sick, but still at home.”
I've been following the Survivor Corps group since the start. It is now over 106k people strong and while anecdotal, has been very eye opening listening to people share their stories. Take everything with a grain of salt and wait for the official studies, but there is some definite patterns there to consider.
While trying to find information about my own post-COVID symptoms I stumbled upon a myriad of facebook groups.
I quickly discovered that my, at the time, main problem of extreme insomnia seemed to be a very common one. I lingered in the groups, but it became apparent that it was a gathering of superstition and unscientifical ideas.
It reminded me of the same kind of groups for stuff for things like ME, MS and other things people tend to self diagnose.
2 months after first symptoms I am finally back to normal. The first month was dominated by debilitating fatigue, then debilitating insomnia. And I had COVID light.
Plus I believe that a portion of long term symptoms are effects of high Stress/Anxiety, or even PTSD. These experiences are so unusual from the average person that a lot of people are experiencing it for the first time, and they see how it manifests into physical symptoms.
For example: people are reporting hairloss, months after having experienced covid, while it's not directly related to covid, it's due to the fact that your body experienced extreme stress and as a consequence you alt your hair growth cycle, and you shed.
Even those with mild symptoms, or no symptoms, the anxiety of knowing they could be at potential risk to die is enough for a lot of people to experience a lot stress and anxiety.
I have not had covid yet. With regards to fear, I am the opposite. Knowing what could be coming is more comforting. I find that reading stories about how people caught it, is good tips on how to avoid it. I take the inputs without emotion and it has been extremely helpful for my own stress levels.
"We currently don’t have enough information yet to say whether someone will definitely be immune and protected from reinfection if they have antibodies to the virus."
I get what you are saying. I want to argue that for me it was not the case.
I'm no stranger to being sick. I had my first MS attack at 12, and at 38 I'd be a wreck if I'd let those things affect me significantly. When we (my wife and daughter demonstrated symptoms 2 days after me) got sick we might have been stressed out by it all, but it quickly faded. It was certainly gone a month later once the insomnia hit me.
The fatigue I experienced I can confidently describe as just as bad as MS-fatigue would affect me in my initial decade of illness.
The accompanying brain fog and extreme mental exhaustion (even if the body would still be able to perform the mind would not) is not something I've never experienced except for with MS and with COVID.
Due to medication (Gilenya) and having moved to the tropics, my MS fatigue is near non-existant. The COVID fatigue was an unwelcome old friend that came to visit. But with my experience with it from earlier I know how to deal with it (Don't expect too much of yourself. Don't get upset when you can't do the things you want to do. Rest.)
There are plenty of other viruses/infections that produce "long-hauler" effects. Just last year, I had a cough that lingered for nearly 4 months. It was annoying, but has happened to me before.
That's not to say we shouldn't worry about long-term effects of COVID. I'm just worried that the tone of this type of article is panic-inducing and does more harm than good.
At this point (and maybe rightfully so?) COVID is the bogeyman to which we attribute every bizarre symptom. One person in the article didn't even have a confirmed diagnosis. Since the doctors couldn't figure it out, they just said "Meh, probably COVID".
Long-haul symptoms in cases of serious disease are of course expected and unsurprising to doctors.
In the mild cases... look. People seem to consistently take for granted that "some health care professionals’ skepticism that their persistent symptoms have a physiological basis" are unjustified. But we know that people can suffer badly from conditions with no physiological basis, and this is the most stressful year in a lot of people's lives. How do the number of sufferers, symptoms, etc. differ between Covid-19 long haulers and, say, electromagnetic hypersensitivity?
As other comments have noted, these experiences are not unique to COVID. However, it strengthens one of the messages that needs to be heard - that this pandemic does not bring a black and white result that people live or die. There are damages this disease can bring to your life even while you survive the disease.
Where I live in Utah, there is a strong attitude of: "Utahns are young and healthy. We won't die, so lets just let the virus run rampant. We'll all recover and go on with life." That attitude is part of the reason we're currently one of the hotspots in the country. Stories like this help show why that attitude is wrong.
It's not wrong though. You will recover and get on with life much better than if you let it slowly eat through the population and take a huge economic and social/emotional toll. Sweden has it right.
I'd strongly discount anecdotal reports or even large-scale studies without adequate control groups.
I spend a lot of time on hemochromatosis forums. And a constant theme are people convinced that their non-specific symptoms are caused by iron overload, when their blood work or genetic results indicate that this almost certainly isn't the case. Most of the complaints are the same type of vague symptoms that you find with Covid long-haulers: fatigue, joint pain, shortness of breath, brain fog. It's not a coincidence that those are also the same problems that occur with generalized unhealthiness.
Unfortunately a shockingly high number of Americans feel like shit all the time. Most of them are desperately seeking a silver bullet to explain their suffering. The sad reality is that the vast majority of cases come from getting older and unhealthy lifestyles. People are obese, they lead sedentary lives, they don't get enough sleep, their diets are all junk food, they smoke, they drink too much, they live with chronic stress.
The impact isn't so bad when you're young, but it wears you down fast when you start hitting middle age. So not only, do they feel crappy, but they're not accustomed to feeling this way. It's quite natural for anyone in that position to convince themselves that their ailments must be attributable to a specific disease.
Surely being in the midst of a pandemic with no cure is the time to be overly cautious about long term implications. We have nothing but anecdotal reports because the disease has been around for a year. If infections disease experts are worried about long haulers, I'm more inclined to trust their judgement than someone saying it's probably not a big deal because Americans are just fat and drunk.
I agree, but it's my understanding that infectious disease experts aren't the ones presenting these worries about long haulers. None of the doctors quoted in the article seem to be infectious disease experts.
Check out TWiV (https://www.microbe.tv/twiv/ it's a podcast but the hosts are infections disease experts), they've been talking about long hauler research (at this point, mostly just reports from clinical physicians) for months.
Talking about to provide a platform for conversation of a phenomenon to understand it or talking about it to push the conclusions because they think they are valid? Genuine question as I haven't followed that podcast.
It's pretty neutral and evidenced based... the hosts are all MDs or PhDs or both. They criticize political decisions that they feel are based on bad science, but they usually stick to what can be objectively measured and proven.
None of the doctors quoted in the article seem to be infectious disease experts.
The very first doctor quoted is Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases. You might want to reconsider that "None".
”Anecdotally, there’s no question that there are a considerable number of individuals who have a postviral syndrome that really, in many respects, can incapacitate them for weeks and weeks following so-called recovery and clearing of the virus,”
in other words, he’s acknowledging that these people exist and are reporting something. He’s not saying anything about the validity of their claims.
He is later quoted as saying that the symptoms are highly suggestive of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This indicates that Fauci believes that many of the claims are valid, and is suggesting a potentially fruitful area of investigation.
You can add to that the many scientific publications cited about what fraction of people seem to encounter these symptoms and what symptoms they are. While I agree that self-diagnosis by hypochondriacs will lead to a lot of anecdotes not based in reality, there is also plenty of evidence that there is a real issue here as well.
”He is later quoted as saying that the symptoms are highly suggestive of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).”
Right, which is still pure
speculation. And by the way: CFS is a diagnosis of exclusion. The man is obviously not validating that thousands of people have an illness based on anecdotes. That would be a sure way to lose his medical license.
” You can add to that the many scientific publications cited about what fraction of people seem to encounter these symptoms and what symptoms they are.”
So far, that number is “zero”.
There have been no publications showing any evidence that “these symptoms” occur at any rate above baseline in the population. If any existed, sure they’d have mentioned them in this article?
There have been a few publications suggesting cardiac involvement in a small number of patients. To date, most of these have been withdrawn or debunked. Beyond this, the “publications“ on “long-haul Covid” consist almost exclusively of self-reported symptom data from people who self-select for feeling crummy.
But I am always interested in evidence, and I welcome you to cite the research upon which you’re basing your conjecture.
Furthermore note that the result wouldn't be surprising. Long-term followup on SARS finds that 15 years after being infected, 4.6% still had visible lesions in the lungs and 38% had reduced diffusion capacity. Given that, the claim that a significant minority (eg > 5%) of people with COVID-19 should still have significant symptoms after several months seems quite plausible.
You are only describing subset of such people, and maybe even a minority. Many people who suffer from these generalized symptoms you mention are not middle aged. Many of them lead generally healthy lifestyles. Many of them have specific symptoms that don't go away with regular exercise, and many of them do not lead very stressful lives, aside from the symptoms they feel.
It is simply a fact that medicine is ill equipped to deal with generalized symptoms in the absence of obvious test results. It is also a fact that many of these symptoms are attributable to things we DO have tests for (take hyperparathyroidism as an example), leading to the perfectly reasonable assumption among sufferers that there might be a solution to their problems, if only they could figure it out, leading many to self experimentation because they have no other recourse. And of course, there is an answer for each person. In some cases it just goes away, in some cases the general advice of "try sleep and exercise" works well, but in many cases they simply can't be helped by medicine. We don't know what we don't know.
Also, I'd strongly suggest taking a closer look at Epstein-Barr.
I know most people had it (mononucleosis/kissing disease) but some are way worse affected. It's a herpes virus as well, just sticking around.
When I had it, it wasn't half as bad as some class mates but way worse than others. So kinda in between. But the consequences have fucked me up for the last 15 years. My health has never been the same - including the development of long term diagnosed issues.
Yeah, as much as I would tend to agree with the parent comment in their skepticism, after having mono I have to agree with you.
Had mono, felt like shit for a few weeks. Was taking painkillers just so I could swallow without feeling like I was trying to eat razor blades.
Me before those three weeks and me after is... markedly different.
Sure, I don't live the healthiest lifestyle, but I didn't life the healthiest lifestyle before either.
I haven't felt rested again since. Whereas I'd previously be up at about 9am every day of my own accord, now I'll sleep until 3 or 4 pm given the chance (i.e., no alarm set).
Unless I suddenly aged twenty years in those three weeks, it's a damn big coincidence.
Are there similar stories of lingering pain/symptoms from people who suffered traumatic injuries or survival events?
I (35M) fell ill with covid-like illness and a period of post-fatigue between feb and april and still haven't 'recovered fully'; When I test my body, it's obviously very capable and fit (more than before when I was sick, even) and so I've come to an understanding that I must approach this as something like a trauma that I'm still processing or an injury I'm slowly mending from.
If you were in a serious vehicle accident or injure a major muscle group or tear a ligament, your posture and form doesn't just return to pristine form when the body repairs itself, common wisdom would say to go to a physical therapist and practice a set of deliberate exercises designed to restore your strength and help your body re-learn what is a correct form/posture/movement/recruitment. After plenty of injuries, there's an expected "you won't be the same after this"
It makes sense to me that something similar is at work here; I wonder, how many of these people are making an unreasonable assumption that they would recover to their full capacity without trying to cultivate it? How much of the association with 'long-term symptoms' is an anxiety/panic/fear/trauma response from grappling with a novel virus which was once advertised as extremely serious and likely fatal?
May be mumbo jumbo but when folks I've talked to had this sort of "phantom illness" they figured it was probably mostly in their head/trauma - this is a resource I've heard multiple people swear buy, though they've said not to get too deep into the dogma of it and if it helps it helps...
Thank you! This article was extremely interesting. I think, after visiting a range of physicians, it's worth approaching my medical issues from a new perspective. I am kind of tired of having pain and discomfort dismissed as imaginary.
I covered my bases by having had actual physicians look at me and now I can safely take a new approach without disregarding the advice of medical professionals.
It's anecdotal evidence, I can see that. Your point that people who did have covid and still have shortness of breath and fever episodes months after is just a completely unrelated lifestyle issue is a little far fetched. We do need more data about this, but we shouldn't discount the limited information we already have.
I go one step further and simply ignore any n=1 report about matters like these that I read through internet. The insight that "false news travels faster than true stories" applies more broadly and sometimes more subtly: extraordinary but statistically insignificant truths travel faster than statistically significant truths.
It seems like dismissing their symptoms without specifically identifying why they feel the way they do is as much as a mistake as insisting that there is a specific disease when the tests say otherwise. There must be a more scientific study of large scale public health - what field is that, Epidemiology? Is there also some form of medical Anthropology?
On a population scale, one rarely has "adequate control groups" it would seem to me. What is the process of going from anecdotes to identifying a distinct population with problem to work on in epidemiology? We can't just shrug and say, it must be mistaken because there's no control group.
Medical anthropology is definitely a thing. It studies the cultural aspects of medicine: popular beliefs about the nature of health and sickness, attitudes toward treatment, the relationship between doctors and patients, etc. Given the complicated and often counterproductive beliefs about disease control in the US today, it feels like a pretty important field.
A popular science title from this area is The Spirit Catches You and You Fall Down, about the relationship between a Hmong family with an epileptic child and their doctors. I think it's often assigned reading for students in the medical professions.
Since lockdown here in california, I've gone from six to nine hours of sleep. Cut out my three hour a day commute - so have more time to work / not work. Picked up a few minor hobbies.
I've lost 30 pounds and haven't started exercising or dieting in any meaningful way. My appetite is much weaker than it was before and I am usually hungry now, but don't have a strong desire to eat until I'm deeply hungry.
It's pretty wild how spot on you are about the healthiness in general - I was living a very unhealthy life - high blood pressure etc...
That's... I don't know how I feel about that. Good on you!
My sleep went from 8 hours a night to 6, at best. I can hardly concentrate in my apartment. It is sweltering hot and surrounded by constant noise. I've had to work longer hours to make up for the loss in productivity.
My commute used to be a pleasant bike ride. Now I am wearing a dent into the couch cushions.
I have gained 10 pounds, despite eating less. I have started running, but I don't have the time or stamina to run more than a few miles each day.
There are a lot of things that go into it. I live in the south bay so have a large living space, so home office is not a problem. I've hit an interesting crossroads in my career where I feel like I have confidence and stability in what ever comes next, which has never been true in my career, but I've also never really cared until now :)
I'm married, so my roommate is my wife who also has her own separate office. I think this is huge.
You didn't ask my advice and I don't know if you care, but having been through three recessions now, I'd suggest you get out of town to somewhere with more space and freedom and take advantage of the remote work world if that's an option for you.
The other side: I'm a hermit. I actually prefer not socializing, going out, meeting people (exceptions exist), and any day-to-day routine the most people find comforting.
I think that's a larger factor in my general improvement in quality of life - and I'm dreading going back to the normal routine that we need to get back to so the rest of the world can have more stability, but nobody will empathize with me then, or now, which is OK, I'm weird.
No worries, I appreciate you sharing your experience!
I feel like I'd get the same distractions everywhere in suburbia (and I am in suburban Palo Alto): constant delivery vans rumbling into the yard, lawn care teams with gas-powered leaf blowers at my apartment, adjacent apartment, across the road, people who idle their pickup trucks under my windows day and night, a Roto-Rooter van that shows up to the neighbors over and over, people who shout obscenities out the window while playing COD at night, the neighbor with an outdoor punching bag, and so on.
I find even an office with an open floorplan far more peaceful and quiet. I'll take the first opportunity I can, responsibly, take to work from an office or coworking space.
By comparison, 2008 was barely a blip on the radar for me. Stressful, but I wasn't crawling up the walls the way I feel I am now.
It's amazing how wildly different all of us are, and how we all try to build systems we can all use despite that :)
I am lucky in Sunnyvale - I think. Way less residential noisy stuff - and the area is mostly families and is surprisingly quiet that definitely helps a lot. In an office, just given my role, I can never get away from people long enough to focus.
2008 was mostly a blip for me too - had a brief pay hit and less certainty on a job, but wasn't too scary.
I feel very much for folks like you and everyone out there who's feeling the pangs of this state of the world - hang in there!
This is very interesting to me. I suffer from Ulcerative Colitis and ever since my disease my joints have gotten worse and worse. I used to be a runner, but now I can’t run or jump anymore and I often suffer from joint aches.
I have been trying to figure out if this is just a function of me getting older, if I am just imagining it, or if it is related to my illness. Reading from others with IBD, they also report the same kind of symptoms that you describe, vague ones. But joint aches and pain is a recurring theme. Medicine doesn’t seem to say much about it and my doctor is a pragmatist who basically says: “a lot of patients report joint aches and pain, but we just don’t know”.
It is interesting to me because I can relate to it. Sure. Maybe this can all be written off as pains and symptoms imagined, but there might also be truth in there. Regarding COVID it seems there is so many unknowns.
I am not sure where I am going with this. I guess my point is that this is very interesting, especially in light of your comment, I hope the phenomenon is studied soon.
There is such a thing as imagined symptoms and there is such a thing as real symptoms dismissed. It is more comfortable to tell patient it's imagining it then anything that we don't know.
they can be used to prioritize resources to create the real study, and they are the crux of our evolutionary selection thus far.
when the former is not available, the latter has been pretty reliable for self-preservation even if the "why" isn't apparent or is completely made up conjecture.
there is no utility in lecturing on anecdotes when the complete scientific mindshare of planet is looking in different directions that may be just as irrelevant as the anecdote.
Anecdotes are data. Quite literally. Each is one data point. A data point is not a conclusion. To draw valid conclusions you need a large body of data. But each anecdote is, quite literally, a single data point.
The director of the NIH feels these anecdotal reports are credible, along with doctors in France, Hong Kong, and Italy (as the article mentions).
So I don't mean to be rude about it but what exactly is your expertise that lends credence to your theory that all these doctors opinions (who have directly treated COVID-19 and SARS patients) should be dismissed due to your theory of Americans being fat and sedentary?
Frankly, on the surface your comments sounds like the typically dismissive HN attitude that's been persistent on this site (and the engineering sphere in general) since the on-set.
Nowhere in the article did it say that the directory of the NIH call the anecdotal reports "credible". The NIH is conducting a survey, which is the only responsible response given the magnitude of the pandemic. But that is not the same as an endorsement of credibility at all. If testing a hypothesis meant endorsing a hypothesis, then science could never happen.
As for "doctors in France and Hong Kong", there's 10 million physicians worldwide. Pick any theory, and you'll find no shortage of doctors somewhere who endorses it. Despite what public perception, being a physician does not make one a scientist. The reality is that the vast majority of doctors do not understand basic statistics[1].
So yes, I would indeed claim that opinion of statisticians, engineers, physical scientists, economists and other fields with expertise in statistics can in many cases be as relevant, it not more than relevant than physicians. Particularly, in cases like this, when the conclusions are being made off a small signal in a large-scale dataset.
>Nowhere in the article did it say that the directory of the NIH call the anecdotal reports "credible".
Sounds like nitpicking to me. Dr. Fauci directly says it needs to be seriously looked at.
>“Anecdotally, there’s no question that there are a considerable number of individuals who have a postviral syndrome that really, in many respects, can incapacitate them for weeks and weeks following so-called recovery and clearing of the virus,” Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases, said in July during a COVID-19 webinar organized by the International AIDS Society.
Also in the webinar:
>"This is something we really need to seriously look at because it very well might be a post-viral syndrome associated with COVID-19".
That sounds like he finds them credible.
No one's arguing doctors are sometimes wrong. The issue is whether it's warranted to dismiss the opinions of independent experts around the world who have now seen multiple new coronavirus outbreaks, even if we don't have scientific studies on the current coronavirus outbreak.
"Credible" means believable, plausible, reasonable. Dr. Fauci is clearly saying the reports coming from doctors and patients around the world shouldn't be dismissed, but should be taken seriously and investigated further.
The accounts are true but the "size" of their stories is an indirect fear superspreader.
The reality is that these things effect like .00002% of the population. But a news story shared today on the Internet can make tens of millions in the general the population think it could happen to them.
I had a friend who had Covid. He loss an enormous amount loss weight and nearly went to hospital. He suffered bad symptoms for two months. When you have Covid you know you have it.
I strongly discount comments on an internet forum.
The challenge with ascribing complaints of illness to underlying chronic health issues is accounting for change.
It's easy for almost any person to tell that they feel worse than they usually do; we all do it when we get sick. Think about how you know when you're sick: you feel worse than usual.
So when someone says "I feel worse after COVID than I did before" (not just "I feel bad in general"), doctors are going to reasonably start by treating that as a real report of a significant change in health.
Note that the parent comment isn’t saying it couldn’t be a real phenomenon, just that you need proper studies to distinguish it from people’s general tendency to wrongly attribute causation. Assuming there exists a group of post-covid patients who have prolonged symptoms, it’s in their best interests that there be a proper study, with a robust case definition. Otherwise, we’re unlikely to find any therapeutic interventions that will help these people, because any actual therapeutic benefit may be drowned out by potentially large numbers of other people who have similar symptoms but not the same etiology.
FWIW, I’m an ER doc and see lot’s of covid and post-covid patients, as well as working with lots of staff who have had it - for most people, the after-effects last longer than a bad flu, but not as long as, say, after getting a bacterial pneumonia. But it’s certainly plausible that covid could cause prolonged symptoms (3-6 months) in some patients.
So the way to “take these patients seriously” is not to assume their prolonged symptoms must be due to covid, but to consider that they might be due to covid...and then use that to motivate a study that actually investigates the phenomenon.
I think this is the correct take on the top level comment. It is more dismissive than needed but is trying to get the point across that the data cannot speak for itself and is amplified by the voices of the patients seeking answers. Modern medicine may have clues but no single answer or test to confirm. We won't have anything definitive and applicable to the general population without proper research and an adequate sample size.
This comment lacks a knowledge of epidemiologic methods and is relying on knocking forum posting, while ignoring the real scientific procedure being cited in the article.
Have you read the studies linked? How would you even suggest control groups are used for the studies mentioned -- they are case-series, which is a legitimate form of scientific research that doesn't use controls. These are COVID-19 patients who were hospitalized who continue to have symptoms for months. There is not a treatment we are testing here, which would be an RCT and would include a control-arm.
If you're thinking of case-control study, that'd be nice here, however it requires a retrospective lookback where you find cases like the above case-series reports have just done, but you then have to find a bunch of other COVID-19 patients from the same hospital/demographic group to then compare over time with the cases. This sort of study takes time and there's no way it could've been completed yet, as we are just uncovering the phenomenon now with case series. So, if these scientists are doing their job, they will follow-up and do the case-control lookback studies, though they won't be out for 6-12 months.
The science here is working as intended. Case series are always going to be the first out of the gate, it was that way with HIV/AIDS in SF, and it appears that it's that way with COVID-19 long term complications. It's not just "forums" as you stated it, there are real case-series articles published on this phenomenon.
One form of control would be a representative part of the population who are NOT post-covid. The null hypothesis argument would be: how many of these cases would be present independent of covid infection status?
For example, the circumstances of this pandemic have notably increased anxiety and depression rates as well as increasing stress. How many people might have symptoms like fatigue, brain fog, aches, and other inflammation explainable just by this stressful environment even without viral exposure?
While I don't doubt that a lot of these people might just have underlying unhealthiness, many viral diseases can absolutely knock the wind out of you.
A few years ago, we had a massive chikungunya outbreak in my country. Nearly a dozen people in my extended family caught it, including my father. They all had severe body aches that lasted months, some even years. A professional athlete who had gone through several major sports injuries described it as the worst pain he had ever experienced.
I know one Covid long-hauler personally. She's in excellent physical shape, and has worked for several years as a paramedic (which is, in fact, where she caught Covid). She's got medical training, professional expertise, and is generally an all-around no-bullshit kind of person. It's been six months since her original diagnosis, and she still has lingering symptoms - on bad days she can't climb up a flight of steps without getting winded, despite literally running 10Ks earlier this year. This is just a single anecdote, and COVID long-haulers may not be as widespread or as significant as the article suggests, but having witnessed her experience firsthand I'm absolutely not willing to write it off.
We are saying exceptional stories like hers are repeated and spread by the media. These stories scare the general population because they think it could happen to them. Statistics tell us otherwise but most people don't know that but instead they react emotionally and get scared.
On one hand these people's stories need to be shared. On the other hand sharing them spreads fear and, indirect, mis-information about the potency of the virus.
I don't have a good answer but stories like this bring eyeballs and viewers to the media. That's their goal and by attaining that goal they're scaring the public.
Your quoted figures were surprising to me so I went and read the source. Are you aware that the statistics you're citing explicitly don't include over half of the deaths in the sample? It's the fifth paragraph,
> Although nursing home residents were not tested, they represented 54.9% of Indiana's deaths. Thus, we excluded nursing home residents from all calculations (that is, deaths and infections).
The point the original post is making is that it's not just about dying. You don't know what the other effects may be on your body. Are you willing to roll the dice on it?
Furthermore, the more people that have it, the more out of control it will be. Obviously. And while on average your chances of death or debilitation are low, it will have outsized effects on minorities, frontline workers, and other groups. You're not just rolling the dice on your own health, you're doing so with the health of everyone you interact with as well.
Studies and statistics also tell us that as a young person below the age of 50 you have a 0.01% chance of succumbing to COVID. Yet, you will read the stories of the unfortunate few as if it's NORMAL that this happens to people. It's not. Those are outliers but media report on these real cases but inflate them as if the bubonic plaque has hit the planet.
Coronavirus is very dangerous and worse than the flu. But we need to stop acting as if this is a population killer virus. We have a pandemic and we need to stop it but the amount of panic-inducing articles and videos is insane. We need a level-headed approach.
Make no mistake - I believe in and support the measures we take. Fully. I wear mask whenever required and even more often than that. I want to keep others safe from this virus and keeping distance/wearing a mask costs nothing. We need to stop this virus especially since it's rather novel.
BUT. And this is a big but. You have to explain to the same people who shut down their shops a few months ago and might have to do so again that we are tanking the economy on purpose (Germany in my case).
This will also cost lives. It's just harder to make that connection but people will die as a result of lockdown measures. Why is death by Corona less okay then death by shitty economy and its effects? What is this weird disregard for other deaths when compared to Corona? Because it's more tangible?
All kinds of metrics are telling us that poor economic performance and economic depressions are directly correlated with increased deaths, e.g. suicides or simply shittier healthcare.
It's just impossible to openly talk about this without causing a demon rampage.
That's not too far fetched. It is well known that heart and, obviously, lungs are affected by COVID19. Add to that a potentially week long sickness and I am not surprised your friend is in a bad shape. Compare this to coma patients, for instance.
The question is: Is her condition chronic? That is, given a good treatment, diet, and specific exercise, could she return to normal? What did she do after recovery?
I think part of it a cultural idea, perhaps driven by our employment system and antibiotics, that it takes about 1-5 days to get over a most illnesses.
If you read older literature, you see people taking months to get over things like the flu, a whole process of recuperation completely unheard of even among those who may have the affluence today to do it.
There are the outliers who may never recover from COVID, people who assign their general discontentments to it, but I suspect there is another group that maybe just needed more than a week or two to recover and are suffering the consequences of not taking it or not being allowed to take it.
I’ve had flu about 6 times in my life (I mean real flu, not sniffles/cold) and even when I was younger, a 5-day recovery would have been a miracle. For me it’s 2 weeks to feel normal, at a minimum!
I've had flu, or something with symptoms like it, twice as an adult, and both times it took a whole month to get through the "really feeling awful and stuck in bed" stage.
Recovery was quick afterwards. But just being ill was much more than a 1-5 day event.
I also know what really sounds like a COVID long-hauler personally. She's in her 30s, in shape, ran long races as recently as last year, worked as a dev at a healthcare startup and is in the final stages of applying to med school as a returning student.
She's been down for 5-6 months now with recurring symptoms like fatigue and shortness of breath. She's had a very extensive health workup to exclude a number of possibilities (thyroid disorder? CMV?), but is now basically resigned to living with what amounts to moderate asthma and exercise intolerance.
The idea that people are imagining this, as other commenters have put forward, is nonsense. The idea that people are just getting old and drink too much soda isn’t right either although it’s close.
The reason why people report similar or overlapping symptoms is because they all have a problem with their immune systems. Overactive immune systems tend to cause a certain set of symptoms.
The immune system is very complicated, very broad in its jurisdiction and very poorly understood. It is scientifically proven that certain chemicals (common food additives for example) cause no immune (allergic) response at all whatsoever, but cause an immune response to other chemicals. So the immune system is not just complex as a monolith but also has inputs that interact with one another, leading to a combinatoric level of complexity. When you also consider that immune function and mediation (as seen with some food additives, for example) is observed in emotional stress — something that is as close to being unquantifiable as anything could be — one can see that it might be the case that this is a disease that has evaded medical science until now.
Chronic fatigue syndrome was observed in gulf war vets and was so common among them that it was coined “gulf war syndrome.” One researcher has hypothesized that this is due to an immune response which takes the form of cell deactivation via ATP signaling which he has named “cell danger response.”
Meanwhile, it is widely appreciated that autism is not caused by destroyed neural circuits but by deactivated neural circuits. And people with autism can experience remission under certain circumstances, like having parts of their brain electrically shocked, most commonly via TMS. Cell danger response could also explain this.
This researcher, whose name is too complicated to bother spelling it, used this hypothesis to design a study in which an obscure drug that blocks ATP receptors was given to autistic children. All of the children who received this drug experienced immediate and unprecedented improvement in their symptoms, unprecedented both in the context of these patients and in the context of medical science. That was just months ago. Further studies are coming.
The gulf war vets were all exposed to chemicals, stress and a heavy regimen of crazy vaccines designed to make them immune to biological warfare agents, if I remember correctly.
As I have pointed out, immune inputs influence one another. The combination of stress, chemicals and vaccines likely caused gulf war syndrome, even though politically this begins to ruffle feathers.
There has been no study so far that has looked for a connection between this wholistic idea of immune dysfunction and autism. That is to say, there are no studies looking at the combination of stress, chemicals and vaccines and autism. There have been no studies looking for a connection between the former and a collection of disorders that might include autism. Further, there have been no purely randomized studies looking for a connection between vaccines and autism. But as I have shown, even if there were, it might still miss the connection because the connection is not between vaccines and autism, it is between many immune system inputs and many possible adverse outcomes. And that is not even to consider the fact that autism might have multiple, totally separate and distinct causes besides immune dysfunction, which again none of the current studies look for. The issue is not settled and people who bark at me when I bring this up are stymying science...
Obviously, even if what I claim is true then it would still be in the best interest of society to administer vaccines. Please do not lose your composure.
Until very recently I had absolutely no inclination to believe that chronic fatigue was real or that there might be some sliver of truth to the vaccine thing. But then I was stricken by an immune pr...
So a single person decides they don’t like my comment and now it’s faded out where nobody will bother reading it. I think it’s important so I am asking for the upvotes to not dip below zero because I would like as many people to read it as possible whether they upvote or not... it was a similar comment that literally saved my life.
I think you knew what you were getting into when you brought up the autism issue. It's an extremely controversial topic. FWIW even with the down-votes, I read your comment.
There is a lot of data that we could study from everyone given the unique expressions of our immune systems. And with many variables that exist, we measure a miniscule few and therefore cannot often get a good picture of chronic health issues. As to your comment downvote, it may rise again. Sometimes trolls and/or people who don't like new ideas will readily dismiss things (here and elsewhere).
Note that many people read downvoted comments, and upvote them to counteract “unfair” downvotes. If you regularly get downvoted by more than -1, I would read it as a strong signal that you need to be more critical in how you present your thoughts.
I think that your comment deserves the downvotes (despite how factual it may be), because you are bringing in contentious subjects without sufficient nuance, and without tying them into the topic very well.
> [Eric Topol]: Moreover, there are a lot of things that we still don't understand. Like, for example, "long COVID." What is your sense about long COVID?
> Offit: You're referring to people reporting long-lasting symptoms, such as depression, joint pain, low-grade fever?
> Topol: Right. Joint pain, brain fog, chest discomfort, difficulty breathing, very poor exercise tolerance, some that has been continuing since acute infections in March. For some people, it is still going on and very disabling. But it seems to affect an unknown percent of people.
> Offit: I think it's probably a reflection of a couple of things. In part it is probably because of the vasculitis which is causing damage in a variety of organs, and that can be chronic. Scarring of the lung can be somewhat disabling. I think we'll learn about that over time.
> Then there may be an ICU psychosis associated with this; for patients who are in the ICU for a long time, when they come out of it, there's a sort of brain fog, or depression, which may be part of this. So I think there may be overlapping things going on.
> I think it's real. I don't think it's just something people are making up. I think this is a real problem. We'll learn about it as we gather more information on this virus.
(Offit's expertise is of course in vaccines and not management of COVID-19 - this was just an aside in an interview that was mostly about the timeline and success criteria for SARS-CoV-2 vaccines.)
Stump experts? This happens after nearly every epidemic or pandemic. Avoid over-exerting yourself if you suffer from pvfs, as that can either turn your illness chronic, or worse if it's already chronic.
This is one reason why I take a lot of precautions w/r to covid. I’ve also heard of people suddenly developing diabetes or other chronic diseases. Fucking scary, this ain’t no flu.
there is actually a good amount of literature that is published in the last 20 years on people developing diabetes after the flu. I would not be surprised if this was also the case for covid
Not specific to Covid - but the baseline poor health and poor setup in the US for health should be acknowledged.
Speaking personally.
Stress - moderate factor, can lead to
Insufficient sleep - major factor for me (stress related).
Sedentary life
These link together. When stressed less time to exercise, less sleep -> train wreck for me in my case. I could imagine how Chronic Fatigue sets in, if I pull a very late night my body feels trauma.
The immune system is insanely complex, and a great deal of autoimmune illness is not easily diagnosable with simple blood tests. Many types only get diagnosed after they've wreaked sufficient havoc to show up on radiographic images. Many of these illnesses are triggered in part by infections. There's at least a subset of Covid patients that seem to have an unfortunate autoimmune aspect to blame for their severe symptoms[1]. It's only recently that many neurological autoimmune illnesses affecting behavior are being widely recognized[2]. There are likely many such subtle but profoundly debilitating malfunctions happening all the time in people with various genetic vulnerabilities, and so rather than immediately reaching for a psychosomatic explanation we should recognize how much we still have to learn.
People underestimate what a bad virus can do to your health. A few years ago when a strong version of the flu was going around (winter 2017/spring 2018), I got got either that flu or something similar. I developed a extremely strong cough the day of getting it, along with a high fever of 103-104. I went to the emergency room as I felt I was going to die, and the week after was afraid to go to sleep as I felt I may not wake up. My heart felt extremely strange and my resting pulse which was normally low/mid 40's jumped to consistently above 100 or higher. I was out of work(engineer at a desk job) for 3 weeks. I did not really get over it until 2 months later where I felt better. Even after the 2 months I would feel extremely weak and had what I thought was low blood sugar(levels were fine). This was not covid but it shows what a virus can do to an extremely healthy person and the lingering effects after.
And this is exactly why flu comparisons are apt, even though they are ignored and ridiculed.
Most people have no idea how bad a flu can get if you get it; they hear “flu” but think about the common cold.
The lesson from comparing COVID to flu (with all similarities and differences) is not “just ignore it, it’s nothing” but rather “it’s serious and potentially life threatening, but we do have a couple of millennia of experience dealing with it, let’s learn what we can and remain factual”
My dad (in his 50s but in great health/shape) got a flu around the same time that you did, and had similar problems. Felt flu-y for 3-4 weeks, and then for months afterward he felt weak, had an elevated heartrate, and would get winded walking up his driveway. After a few months the VA finally saw him and they put him on a beta-blocker, which helped. It really reminded me that a random fluke illness can put you down for months. We tend to think of illness as a binary; it's either something quick that you get over in a few days, or something chronic that you will have for the rest of your life. Maybe we should be thinking of viral infections more like we do orthopedic (or psychological) injuries: something that you can adapt to and mostly recover from pretty acutely, but you might need to take it easy on that bum shoulder and it might flare up occasionally.
One more thing to add, with any viral disease it is important to take rest and recovery very seriously.
Putting yourself under stress with work or excercise before you are fully recovered will do severe damage to the body. You migt feel better and even fine after 2 weeks of the flu but it's likely still an ongoing fight in your body. If put under stress, you can develop inflammation of heart tissue and I am willing to bet that this is just a single manifestation of a whole range of issues that may develop in a virus-strained body so soon after acute infection.
Attempt to take as much time as possible for recovery. The world doesn't often allow us to (work, social pressure) but nothing is worse than long-term medical issues that gnaw on you every single day.
We need to reevaluate how we treat or health. Breaking it so some company can have a tiny better bottom line at the end of the year is just not worth it. We are more productive when well rested and healthy anyways.
Anecdotally, I can only speak from my experience getting severe pneumonia (I barely managed to avoid being hospitalized), but I think it's worth considering that since COVID is similar, and it's also similar to HACE/other high-altitude diseases (because of its huge impacts on blood oxygen levels) that much of 'long covid' is likely the long-healing process that follows those sort of diseases.
Speaking for myself, it took me about 6 months to be able to walk up steep hills or stairs without needing to pause or becoming incredibly winded. I had malingering symptoms of the disease for months afterwards. They eventually went away, but I presumed they were likely just the result of getting wrecked by pneumonia.
What i'd be really curious about...what does the recovery for folks who develop severe altitude sickness, edemas, etc look like? As I understand it's pretty brutal at the moment, but no idea of the long-term.
> “We’ve experienced so much medical gaslighting, basically doctors telling us, ‘That’s not what you have. It’s just anxiety,’”
Welcome to the last 5 years of my life. I spent a good chunk of money seeing a psychologist and a therapist, both of which have debunked this "it's in your head" BS doctors like to throw around these days when they don't have an answer. It's an easy out for them. They're swamped and you're no longer easy money, so they grasp for something that can't really be disproved like anxiety.
I know it sounds awful, but I'm glad these long haulers exist and are getting so much attention. It might actually light a fire under doctor's asses to look for answers beyond the typical text-book answers when a diagnosis can't be reached for mysterious neurological symptoms.
In January 2018, when a lot of people at the school where I teach were getting flu and colds, I got a "stuffiness" in my left ear that I figured would just go away. I talked to other people, including my dad, who had similar symptoms and then got better. Then I developed dizziness symptoms, so I went to an ENT and started treatment. Apparently, an unidentified virus caused permanent damage to my left ear resulting in hearing loss and dizziness. After about 18 months the dizziness has gone away as my brain readjusted, but I still have the hearing loss.
All of this is to say that while viruses were going around causing cold and flu symptoms for most people, for some reason it hit me differently. These things happened in the pre-COVID world. I think that COVID-19 is undergoing unprecedented scrutiny, so it may be appearing more unusual than it really is.
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[ 3.0 ms ] story [ 47.9 ms ] threadMy Dad contracted SARS (Swine Flu) 2 years ago and was knocked out for 2-3 weeks and needed at least 2 month until full recovery.
Also, I contracted common colds 4-5 times over the last years every year due to my 3 year old going to the daycare. I got a chronic sinusitis out of that. Am I long-hauler now?
no, because this article is about covid-19, not the rhinovirus. you are offering debate in bad faith.
This piece is mostly about the heart effects of COVID-19, but it hammers home the same point - that none of these effects are particularly unusual or surprising, they're just occurring at a massively larger scale, with massively more news coverage, than before:
https://www.theatlantic.com/health/archive/2020/09/covid-19-...
SARS is a coronavirus and Swine Flu is an influenza.
https://en.m.wikipedia.org/wiki/Severe_acute_respiratory_syn...
https://en.m.wikipedia.org/wiki/Swine_influenza
“Most of the patients that I see who are suffering from [post–COVID-19] syndrome were not hospitalized,” Jessica Dine, MD, a pulmonary specialist at the University of Pennsylvania Perelman School of Medicine, said in an interview. “They were pretty sick, but still at home.”
https://www.facebook.com/groups/COVID19survivorcorps/
I quickly discovered that my, at the time, main problem of extreme insomnia seemed to be a very common one. I lingered in the groups, but it became apparent that it was a gathering of superstition and unscientifical ideas.
It reminded me of the same kind of groups for stuff for things like ME, MS and other things people tend to self diagnose.
2 months after first symptoms I am finally back to normal. The first month was dominated by debilitating fatigue, then debilitating insomnia. And I had COVID light.
For example: people are reporting hairloss, months after having experienced covid, while it's not directly related to covid, it's due to the fact that your body experienced extreme stress and as a consequence you alt your hair growth cycle, and you shed.
Even those with mild symptoms, or no symptoms, the anxiety of knowing they could be at potential risk to die is enough for a lot of people to experience a lot stress and anxiety.
"We currently don’t have enough information yet to say whether someone will definitely be immune and protected from reinfection if they have antibodies to the virus."
[0] https://www.cdc.gov/coronavirus/2019-ncov/lab/resources/anti...
Now i've had it. I survived. It is a known entity. I am no longer afraid as I know that even being immuno compromised I came out on top of it.
I'm no stranger to being sick. I had my first MS attack at 12, and at 38 I'd be a wreck if I'd let those things affect me significantly. When we (my wife and daughter demonstrated symptoms 2 days after me) got sick we might have been stressed out by it all, but it quickly faded. It was certainly gone a month later once the insomnia hit me.
The fatigue I experienced I can confidently describe as just as bad as MS-fatigue would affect me in my initial decade of illness.
The accompanying brain fog and extreme mental exhaustion (even if the body would still be able to perform the mind would not) is not something I've never experienced except for with MS and with COVID.
Due to medication (Gilenya) and having moved to the tropics, my MS fatigue is near non-existant. The COVID fatigue was an unwelcome old friend that came to visit. But with my experience with it from earlier I know how to deal with it (Don't expect too much of yourself. Don't get upset when you can't do the things you want to do. Rest.)
Correction: less than 50 crowd.
That's not to say we shouldn't worry about long-term effects of COVID. I'm just worried that the tone of this type of article is panic-inducing and does more harm than good.
At this point (and maybe rightfully so?) COVID is the bogeyman to which we attribute every bizarre symptom. One person in the article didn't even have a confirmed diagnosis. Since the doctors couldn't figure it out, they just said "Meh, probably COVID".
In the mild cases... look. People seem to consistently take for granted that "some health care professionals’ skepticism that their persistent symptoms have a physiological basis" are unjustified. But we know that people can suffer badly from conditions with no physiological basis, and this is the most stressful year in a lot of people's lives. How do the number of sufferers, symptoms, etc. differ between Covid-19 long haulers and, say, electromagnetic hypersensitivity?
Where I live in Utah, there is a strong attitude of: "Utahns are young and healthy. We won't die, so lets just let the virus run rampant. We'll all recover and go on with life." That attitude is part of the reason we're currently one of the hotspots in the country. Stories like this help show why that attitude is wrong.
I spend a lot of time on hemochromatosis forums. And a constant theme are people convinced that their non-specific symptoms are caused by iron overload, when their blood work or genetic results indicate that this almost certainly isn't the case. Most of the complaints are the same type of vague symptoms that you find with Covid long-haulers: fatigue, joint pain, shortness of breath, brain fog. It's not a coincidence that those are also the same problems that occur with generalized unhealthiness.
Unfortunately a shockingly high number of Americans feel like shit all the time. Most of them are desperately seeking a silver bullet to explain their suffering. The sad reality is that the vast majority of cases come from getting older and unhealthy lifestyles. People are obese, they lead sedentary lives, they don't get enough sleep, their diets are all junk food, they smoke, they drink too much, they live with chronic stress.
The impact isn't so bad when you're young, but it wears you down fast when you start hitting middle age. So not only, do they feel crappy, but they're not accustomed to feeling this way. It's quite natural for anyone in that position to convince themselves that their ailments must be attributable to a specific disease.
https://en.wikipedia.org/wiki/Fibromyalgia
The very first doctor quoted is Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases. You might want to reconsider that "None".
”Anecdotally, there’s no question that there are a considerable number of individuals who have a postviral syndrome that really, in many respects, can incapacitate them for weeks and weeks following so-called recovery and clearing of the virus,”
in other words, he’s acknowledging that these people exist and are reporting something. He’s not saying anything about the validity of their claims.
You can add to that the many scientific publications cited about what fraction of people seem to encounter these symptoms and what symptoms they are. While I agree that self-diagnosis by hypochondriacs will lead to a lot of anecdotes not based in reality, there is also plenty of evidence that there is a real issue here as well.
Right, which is still pure speculation. And by the way: CFS is a diagnosis of exclusion. The man is obviously not validating that thousands of people have an illness based on anecdotes. That would be a sure way to lose his medical license.
” You can add to that the many scientific publications cited about what fraction of people seem to encounter these symptoms and what symptoms they are.”
So far, that number is “zero”.
There have been no publications showing any evidence that “these symptoms” occur at any rate above baseline in the population. If any existed, sure they’d have mentioned them in this article?
There have been a few publications suggesting cardiac involvement in a small number of patients. To date, most of these have been withdrawn or debunked. Beyond this, the “publications“ on “long-haul Covid” consist almost exclusively of self-reported symptom data from people who self-select for feeling crummy.
But I am always interested in evidence, and I welcome you to cite the research upon which you’re basing your conjecture.
That doesn't seem like "zero" to me.
Furthermore note that the result wouldn't be surprising. Long-term followup on SARS finds that 15 years after being infected, 4.6% still had visible lesions in the lungs and 38% had reduced diffusion capacity. Given that, the claim that a significant minority (eg > 5%) of people with COVID-19 should still have significant symptoms after several months seems quite plausible.
It is simply a fact that medicine is ill equipped to deal with generalized symptoms in the absence of obvious test results. It is also a fact that many of these symptoms are attributable to things we DO have tests for (take hyperparathyroidism as an example), leading to the perfectly reasonable assumption among sufferers that there might be a solution to their problems, if only they could figure it out, leading many to self experimentation because they have no other recourse. And of course, there is an answer for each person. In some cases it just goes away, in some cases the general advice of "try sleep and exercise" works well, but in many cases they simply can't be helped by medicine. We don't know what we don't know.
I know most people had it (mononucleosis/kissing disease) but some are way worse affected. It's a herpes virus as well, just sticking around.
When I had it, it wasn't half as bad as some class mates but way worse than others. So kinda in between. But the consequences have fucked me up for the last 15 years. My health has never been the same - including the development of long term diagnosed issues.
Had mono, felt like shit for a few weeks. Was taking painkillers just so I could swallow without feeling like I was trying to eat razor blades.
Me before those three weeks and me after is... markedly different.
Sure, I don't live the healthiest lifestyle, but I didn't life the healthiest lifestyle before either.
I haven't felt rested again since. Whereas I'd previously be up at about 9am every day of my own accord, now I'll sleep until 3 or 4 pm given the chance (i.e., no alarm set).
Unless I suddenly aged twenty years in those three weeks, it's a damn big coincidence.
Are there similar stories of lingering pain/symptoms from people who suffered traumatic injuries or survival events?
I (35M) fell ill with covid-like illness and a period of post-fatigue between feb and april and still haven't 'recovered fully'; When I test my body, it's obviously very capable and fit (more than before when I was sick, even) and so I've come to an understanding that I must approach this as something like a trauma that I'm still processing or an injury I'm slowly mending from.
If you were in a serious vehicle accident or injure a major muscle group or tear a ligament, your posture and form doesn't just return to pristine form when the body repairs itself, common wisdom would say to go to a physical therapist and practice a set of deliberate exercises designed to restore your strength and help your body re-learn what is a correct form/posture/movement/recruitment. After plenty of injuries, there's an expected "you won't be the same after this"
It makes sense to me that something similar is at work here; I wonder, how many of these people are making an unreasonable assumption that they would recover to their full capacity without trying to cultivate it? How much of the association with 'long-term symptoms' is an anxiety/panic/fear/trauma response from grappling with a novel virus which was once advertised as extremely serious and likely fatal?
https://aaroniba.net/how-i-cured-my-rsi-pain
I covered my bases by having had actual physicians look at me and now I can safely take a new approach without disregarding the advice of medical professionals.
On a population scale, one rarely has "adequate control groups" it would seem to me. What is the process of going from anecdotes to identifying a distinct population with problem to work on in epidemiology? We can't just shrug and say, it must be mistaken because there's no control group.
A popular science title from this area is The Spirit Catches You and You Fall Down, about the relationship between a Hmong family with an epileptic child and their doctors. I think it's often assigned reading for students in the medical professions.
I've lost 30 pounds and haven't started exercising or dieting in any meaningful way. My appetite is much weaker than it was before and I am usually hungry now, but don't have a strong desire to eat until I'm deeply hungry.
It's pretty wild how spot on you are about the healthiness in general - I was living a very unhealthy life - high blood pressure etc...
My doctor told me to cut out salt LOL.
My sleep went from 8 hours a night to 6, at best. I can hardly concentrate in my apartment. It is sweltering hot and surrounded by constant noise. I've had to work longer hours to make up for the loss in productivity.
My commute used to be a pleasant bike ride. Now I am wearing a dent into the couch cushions.
I have gained 10 pounds, despite eating less. I have started running, but I don't have the time or stamina to run more than a few miles each day.
I'm married, so my roommate is my wife who also has her own separate office. I think this is huge.
You didn't ask my advice and I don't know if you care, but having been through three recessions now, I'd suggest you get out of town to somewhere with more space and freedom and take advantage of the remote work world if that's an option for you.
The other side: I'm a hermit. I actually prefer not socializing, going out, meeting people (exceptions exist), and any day-to-day routine the most people find comforting.
I think that's a larger factor in my general improvement in quality of life - and I'm dreading going back to the normal routine that we need to get back to so the rest of the world can have more stability, but nobody will empathize with me then, or now, which is OK, I'm weird.
I feel like I'd get the same distractions everywhere in suburbia (and I am in suburban Palo Alto): constant delivery vans rumbling into the yard, lawn care teams with gas-powered leaf blowers at my apartment, adjacent apartment, across the road, people who idle their pickup trucks under my windows day and night, a Roto-Rooter van that shows up to the neighbors over and over, people who shout obscenities out the window while playing COD at night, the neighbor with an outdoor punching bag, and so on.
I find even an office with an open floorplan far more peaceful and quiet. I'll take the first opportunity I can, responsibly, take to work from an office or coworking space.
By comparison, 2008 was barely a blip on the radar for me. Stressful, but I wasn't crawling up the walls the way I feel I am now.
I am lucky in Sunnyvale - I think. Way less residential noisy stuff - and the area is mostly families and is surprisingly quiet that definitely helps a lot. In an office, just given my role, I can never get away from people long enough to focus.
2008 was mostly a blip for me too - had a brief pay hit and less certainty on a job, but wasn't too scary.
I feel very much for folks like you and everyone out there who's feeling the pangs of this state of the world - hang in there!
It is interesting to me because I can relate to it. Sure. Maybe this can all be written off as pains and symptoms imagined, but there might also be truth in there. Regarding COVID it seems there is so many unknowns.
I am not sure where I am going with this. I guess my point is that this is very interesting, especially in light of your comment, I hope the phenomenon is studied soon.
they can be used to prioritize resources to create the real study, and they are the crux of our evolutionary selection thus far.
when the former is not available, the latter has been pretty reliable for self-preservation even if the "why" isn't apparent or is completely made up conjecture.
there is no utility in lecturing on anecdotes when the complete scientific mindshare of planet is looking in different directions that may be just as irrelevant as the anecdote.
The state of liberal science.
That part worked, pretty predictably, but it doesn’t seem like you read the argument. Hm.
The state of conservative truthiness.
Gods existence proven!
the person you replied to said that
since it has to be said, with you, that means nobody here is saying that popular anecdotes prove anything
your entire argument is based on a failure to communicate
Even in sociological surveys The surveys ask well crafted questions to avoid anecdotal information.
So I don't mean to be rude about it but what exactly is your expertise that lends credence to your theory that all these doctors opinions (who have directly treated COVID-19 and SARS patients) should be dismissed due to your theory of Americans being fat and sedentary?
Frankly, on the surface your comments sounds like the typically dismissive HN attitude that's been persistent on this site (and the engineering sphere in general) since the on-set.
As for "doctors in France and Hong Kong", there's 10 million physicians worldwide. Pick any theory, and you'll find no shortage of doctors somewhere who endorses it. Despite what public perception, being a physician does not make one a scientist. The reality is that the vast majority of doctors do not understand basic statistics[1].
So yes, I would indeed claim that opinion of statisticians, engineers, physical scientists, economists and other fields with expertise in statistics can in many cases be as relevant, it not more than relevant than physicians. Particularly, in cases like this, when the conclusions are being made off a small signal in a large-scale dataset.
[1] https://medium.com/wintoncentre/why-doctors-are-bad-at-stats...
Sounds like nitpicking to me. Dr. Fauci directly says it needs to be seriously looked at.
>“Anecdotally, there’s no question that there are a considerable number of individuals who have a postviral syndrome that really, in many respects, can incapacitate them for weeks and weeks following so-called recovery and clearing of the virus,” Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases, said in July during a COVID-19 webinar organized by the International AIDS Society.
Also in the webinar:
>"This is something we really need to seriously look at because it very well might be a post-viral syndrome associated with COVID-19".
That sounds like he finds them credible.
No one's arguing doctors are sometimes wrong. The issue is whether it's warranted to dismiss the opinions of independent experts around the world who have now seen multiple new coronavirus outbreaks, even if we don't have scientific studies on the current coronavirus outbreak.
The reality is that these things effect like .00002% of the population. But a news story shared today on the Internet can make tens of millions in the general the population think it could happen to them.
Isn't it a good thing to show some scepticism? It's for this type of comments that I like HN.
I strongly discount comments on an internet forum.
It's easy for almost any person to tell that they feel worse than they usually do; we all do it when we get sick. Think about how you know when you're sick: you feel worse than usual.
So when someone says "I feel worse after COVID than I did before" (not just "I feel bad in general"), doctors are going to reasonably start by treating that as a real report of a significant change in health.
FWIW, I’m an ER doc and see lot’s of covid and post-covid patients, as well as working with lots of staff who have had it - for most people, the after-effects last longer than a bad flu, but not as long as, say, after getting a bacterial pneumonia. But it’s certainly plausible that covid could cause prolonged symptoms (3-6 months) in some patients.
So the way to “take these patients seriously” is not to assume their prolonged symptoms must be due to covid, but to consider that they might be due to covid...and then use that to motivate a study that actually investigates the phenomenon.
Have you read the studies linked? How would you even suggest control groups are used for the studies mentioned -- they are case-series, which is a legitimate form of scientific research that doesn't use controls. These are COVID-19 patients who were hospitalized who continue to have symptoms for months. There is not a treatment we are testing here, which would be an RCT and would include a control-arm.
If you're thinking of case-control study, that'd be nice here, however it requires a retrospective lookback where you find cases like the above case-series reports have just done, but you then have to find a bunch of other COVID-19 patients from the same hospital/demographic group to then compare over time with the cases. This sort of study takes time and there's no way it could've been completed yet, as we are just uncovering the phenomenon now with case series. So, if these scientists are doing their job, they will follow-up and do the case-control lookback studies, though they won't be out for 6-12 months.
The science here is working as intended. Case series are always going to be the first out of the gate, it was that way with HIV/AIDS in SF, and it appears that it's that way with COVID-19 long term complications. It's not just "forums" as you stated it, there are real case-series articles published on this phenomenon.
For example, the circumstances of this pandemic have notably increased anxiety and depression rates as well as increasing stress. How many people might have symptoms like fatigue, brain fog, aches, and other inflammation explainable just by this stressful environment even without viral exposure?
A few years ago, we had a massive chikungunya outbreak in my country. Nearly a dozen people in my extended family caught it, including my father. They all had severe body aches that lasted months, some even years. A professional athlete who had gone through several major sports injuries described it as the worst pain he had ever experienced.
We are saying exceptional stories like hers are repeated and spread by the media. These stories scare the general population because they think it could happen to them. Statistics tell us otherwise but most people don't know that but instead they react emotionally and get scared.
On one hand these people's stories need to be shared. On the other hand sharing them spreads fear and, indirect, mis-information about the potency of the virus.
I don't have a good answer but stories like this bring eyeballs and viewers to the media. That's their goal and by attaining that goal they're scaring the public.
And what if it’s information and not misinformation? And what if the public should be scared?
Infection Fatality Ratios for COVID-19 Among Noninstitutionalized Persons 12 and Older: Results of a Random-Sample Prevalence Study
Sept 2020, Annals of Internal Medicine, study in Indiana, USA
https://www.acpjournals.org/doi/10.7326/M20-5352
People aged 40 or below have a .01% chance of dying.
People over the age of 70 have a 1.17% chance of dying.
Overall the chance of dying from the virus is 0.26%.
I encourage you to share this information.
> Although nursing home residents were not tested, they represented 54.9% of Indiana's deaths. Thus, we excluded nursing home residents from all calculations (that is, deaths and infections).
Furthermore, the more people that have it, the more out of control it will be. Obviously. And while on average your chances of death or debilitation are low, it will have outsized effects on minorities, frontline workers, and other groups. You're not just rolling the dice on your own health, you're doing so with the health of everyone you interact with as well.
Coronavirus is very dangerous and worse than the flu. But we need to stop acting as if this is a population killer virus. We have a pandemic and we need to stop it but the amount of panic-inducing articles and videos is insane. We need a level-headed approach.
Make no mistake - I believe in and support the measures we take. Fully. I wear mask whenever required and even more often than that. I want to keep others safe from this virus and keeping distance/wearing a mask costs nothing. We need to stop this virus especially since it's rather novel.
BUT. And this is a big but. You have to explain to the same people who shut down their shops a few months ago and might have to do so again that we are tanking the economy on purpose (Germany in my case).
This will also cost lives. It's just harder to make that connection but people will die as a result of lockdown measures. Why is death by Corona less okay then death by shitty economy and its effects? What is this weird disregard for other deaths when compared to Corona? Because it's more tangible?
All kinds of metrics are telling us that poor economic performance and economic depressions are directly correlated with increased deaths, e.g. suicides or simply shittier healthcare.
It's just impossible to openly talk about this without causing a demon rampage.
The question is: Is her condition chronic? That is, given a good treatment, diet, and specific exercise, could she return to normal? What did she do after recovery?
If you read older literature, you see people taking months to get over things like the flu, a whole process of recuperation completely unheard of even among those who may have the affluence today to do it.
There are the outliers who may never recover from COVID, people who assign their general discontentments to it, but I suspect there is another group that maybe just needed more than a week or two to recover and are suffering the consequences of not taking it or not being allowed to take it.
Recovery was quick afterwards. But just being ill was much more than a 1-5 day event.
She's been down for 5-6 months now with recurring symptoms like fatigue and shortness of breath. She's had a very extensive health workup to exclude a number of possibilities (thyroid disorder? CMV?), but is now basically resigned to living with what amounts to moderate asthma and exercise intolerance.
The reason why people report similar or overlapping symptoms is because they all have a problem with their immune systems. Overactive immune systems tend to cause a certain set of symptoms.
The immune system is very complicated, very broad in its jurisdiction and very poorly understood. It is scientifically proven that certain chemicals (common food additives for example) cause no immune (allergic) response at all whatsoever, but cause an immune response to other chemicals. So the immune system is not just complex as a monolith but also has inputs that interact with one another, leading to a combinatoric level of complexity. When you also consider that immune function and mediation (as seen with some food additives, for example) is observed in emotional stress — something that is as close to being unquantifiable as anything could be — one can see that it might be the case that this is a disease that has evaded medical science until now.
Chronic fatigue syndrome was observed in gulf war vets and was so common among them that it was coined “gulf war syndrome.” One researcher has hypothesized that this is due to an immune response which takes the form of cell deactivation via ATP signaling which he has named “cell danger response.”
Meanwhile, it is widely appreciated that autism is not caused by destroyed neural circuits but by deactivated neural circuits. And people with autism can experience remission under certain circumstances, like having parts of their brain electrically shocked, most commonly via TMS. Cell danger response could also explain this.
This researcher, whose name is too complicated to bother spelling it, used this hypothesis to design a study in which an obscure drug that blocks ATP receptors was given to autistic children. All of the children who received this drug experienced immediate and unprecedented improvement in their symptoms, unprecedented both in the context of these patients and in the context of medical science. That was just months ago. Further studies are coming.
https://naviauxlab.ucsd.edu/
The gulf war vets were all exposed to chemicals, stress and a heavy regimen of crazy vaccines designed to make them immune to biological warfare agents, if I remember correctly.
As I have pointed out, immune inputs influence one another. The combination of stress, chemicals and vaccines likely caused gulf war syndrome, even though politically this begins to ruffle feathers.
There has been no study so far that has looked for a connection between this wholistic idea of immune dysfunction and autism. That is to say, there are no studies looking at the combination of stress, chemicals and vaccines and autism. There have been no studies looking for a connection between the former and a collection of disorders that might include autism. Further, there have been no purely randomized studies looking for a connection between vaccines and autism. But as I have shown, even if there were, it might still miss the connection because the connection is not between vaccines and autism, it is between many immune system inputs and many possible adverse outcomes. And that is not even to consider the fact that autism might have multiple, totally separate and distinct causes besides immune dysfunction, which again none of the current studies look for. The issue is not settled and people who bark at me when I bring this up are stymying science...
Obviously, even if what I claim is true then it would still be in the best interest of society to administer vaccines. Please do not lose your composure.
Until very recently I had absolutely no inclination to believe that chronic fatigue was real or that there might be some sliver of truth to the vaccine thing. But then I was stricken by an immune pr...
Please don't comment about the voting on comments. It never does any good, and it makes boring reading: https://news.ycombinator.com/newsguidelines.html
Note that many people read downvoted comments, and upvote them to counteract “unfair” downvotes. If you regularly get downvoted by more than -1, I would read it as a strong signal that you need to be more critical in how you present your thoughts.
I think that your comment deserves the downvotes (despite how factual it may be), because you are bringing in contentious subjects without sufficient nuance, and without tying them into the topic very well.
Don’t give up!
> [Eric Topol]: Moreover, there are a lot of things that we still don't understand. Like, for example, "long COVID." What is your sense about long COVID?
> Offit: You're referring to people reporting long-lasting symptoms, such as depression, joint pain, low-grade fever?
> Topol: Right. Joint pain, brain fog, chest discomfort, difficulty breathing, very poor exercise tolerance, some that has been continuing since acute infections in March. For some people, it is still going on and very disabling. But it seems to affect an unknown percent of people.
> Offit: I think it's probably a reflection of a couple of things. In part it is probably because of the vasculitis which is causing damage in a variety of organs, and that can be chronic. Scarring of the lung can be somewhat disabling. I think we'll learn about that over time.
> Then there may be an ICU psychosis associated with this; for patients who are in the ICU for a long time, when they come out of it, there's a sort of brain fog, or depression, which may be part of this. So I think there may be overlapping things going on.
> I think it's real. I don't think it's just something people are making up. I think this is a real problem. We'll learn about it as we gather more information on this virus.
(Offit's expertise is of course in vaccines and not management of COVID-19 - this was just an aside in an interview that was mostly about the timeline and success criteria for SARS-CoV-2 vaccines.)
Speaking personally.
Stress - moderate factor, can lead to Insufficient sleep - major factor for me (stress related). Sedentary life
These link together. When stressed less time to exercise, less sleep -> train wreck for me in my case. I could imagine how Chronic Fatigue sets in, if I pull a very late night my body feels trauma.
The need to have more makes life a lot harder.
1. https://www.sciencemag.org/news/2020/09/hidden-immune-weakne...
2. https://www.med.upenn.edu/autoimmuneneurology/nmdar-encephal....
Most people have no idea how bad a flu can get if you get it; they hear “flu” but think about the common cold.
The lesson from comparing COVID to flu (with all similarities and differences) is not “just ignore it, it’s nothing” but rather “it’s serious and potentially life threatening, but we do have a couple of millennia of experience dealing with it, let’s learn what we can and remain factual”
Putting yourself under stress with work or excercise before you are fully recovered will do severe damage to the body. You migt feel better and even fine after 2 weeks of the flu but it's likely still an ongoing fight in your body. If put under stress, you can develop inflammation of heart tissue and I am willing to bet that this is just a single manifestation of a whole range of issues that may develop in a virus-strained body so soon after acute infection.
Attempt to take as much time as possible for recovery. The world doesn't often allow us to (work, social pressure) but nothing is worse than long-term medical issues that gnaw on you every single day.
We need to reevaluate how we treat or health. Breaking it so some company can have a tiny better bottom line at the end of the year is just not worth it. We are more productive when well rested and healthy anyways.
Speaking for myself, it took me about 6 months to be able to walk up steep hills or stairs without needing to pause or becoming incredibly winded. I had malingering symptoms of the disease for months afterwards. They eventually went away, but I presumed they were likely just the result of getting wrecked by pneumonia.
What i'd be really curious about...what does the recovery for folks who develop severe altitude sickness, edemas, etc look like? As I understand it's pretty brutal at the moment, but no idea of the long-term.
June 11: https://www.washingtonpost.com/health/2020/06/11/coronavirus...
July 1: https://www.wsj.com/amp/articles/three-months-in-these-patie...
Sep 7: https://www.nytimes.com/2020/09/07/health/coronavirus-mental...
Welcome to the last 5 years of my life. I spent a good chunk of money seeing a psychologist and a therapist, both of which have debunked this "it's in your head" BS doctors like to throw around these days when they don't have an answer. It's an easy out for them. They're swamped and you're no longer easy money, so they grasp for something that can't really be disproved like anxiety.
I know it sounds awful, but I'm glad these long haulers exist and are getting so much attention. It might actually light a fire under doctor's asses to look for answers beyond the typical text-book answers when a diagnosis can't be reached for mysterious neurological symptoms.
All of this is to say that while viruses were going around causing cold and flu symptoms for most people, for some reason it hit me differently. These things happened in the pre-COVID world. I think that COVID-19 is undergoing unprecedented scrutiny, so it may be appearing more unusual than it really is.