13 ms·

As Their Numbers Grow, Covid-19 “Long Haulers” Stump Experts

142 points by elorant 6y ago

kalaido 6y ago
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?
- arbitrage 6y ago
  > Am I long-hauler now? no, because this article is about covid-19, not the rhinovirus. you are offering debate in bad faith.
  - oxymoran 6y ago
    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.
    - cmendel 6y ago
      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.
- TFortunato 6y ago
  Did you read the article? They didn't say it was unique to Covid-19, and literally brought up long-term effects of SARS in some patients.
  - twic 6y ago
    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: https://www.theatlantic.com/health/archive/2020/09/covid-19-heart-pandemic-coronavirus-myocarditis/616420/ https://www.theatlantic.com/health/archive/2020/09/covid-19-...
- AriaMinaei 6y ago
  > SARS (Swine Flu) SARS is a coronavirus and Swine Flu is an influenza. https://en.m.wikipedia.org/wiki/Severe_acute_respiratory_syndrome https://en.m.wikipedia.org/wiki/Severe_acute_respiratory_syn... https://en.m.wikipedia.org/wiki/Swine_influenza https://en.m.wikipedia.org/wiki/Swine_influenza
arbitrage 6y ago
> 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.”
latchkey 6y ago
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. https://www.facebook.com/groups/COVID19survivorcorps/ https://www.facebook.com/groups/COVID19survivorcorps/
- nso 6y ago
  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.
  - libertine 6y ago
    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.
    - latchkey 6y ago
      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.
neap24 6y ago
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".
SpicyLemonZest 6y ago
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?
SlipperySlope 6y ago
Gain of Function virus research is evil.
codingdave 6y ago
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.
- ywhjaknskkkw 6y ago
  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.
- deleted 6y ago
  [deleted]
dcolkitt 6y ago
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.
- bob33212 6y ago
  Also sounds like Fibromyalgia. "Onset: Middle Age, Treatment: Healthy Diet,Exercise, Sleep" https://en.wikipedia.org/wiki/Fibromyalgia https://en.wikipedia.org/wiki/Fibromyalgia
- NationalPark 6y ago
  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.
  - SpicyLemonZest 6y ago
    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.
mrfusion 6y ago
Chronic Lyme, fiber myalgia, and chronic fatigue are also mysterious illnesses that many people struggle with.
- wesleywt 6y ago
  All of those are not caught from the air.
vwat 6y ago
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. https://naviauxlab.ucsd.edu/ 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 problem myself, which is a huge story, but coincidentally I found that the ketogenic diet completely cured me which, because my illness fell into an established and unambiguous field of medicine, was totally inexplicable. So I went down the rabbit hole which led me to see that the ketogenic diet is extremely potent anti inflammatory, is useful for curing many other things, and that there is a medical revolution in the pipes regarding inflammation and metabolics, the implications of which I am not sure anyone is ready to reconcile with. https://youtu.be/06e-PwhmSq8 https://youtu.be/06e-PwhmSq8 — Mast cells are immune cells that contain many different kinds of molecules, one of which is the famous “histamine.” These cells release these molecules in response to immune signals. Their chemicals are not understood. It is scientifically proven that (in mice I think) wounds cannot heal without mast cells present. This shows you how broad their function is, and opens even wider the possibility of very complicated and unintuitive problems resulting from their dysfunction. Mast cells are present in the heart, the emotional centers of the brain and many other places. You will notice that many long haulers report tachycardia, depression and anxiety.
mherdeg 6y ago
Paul Offit had some ideas about this in a recent interview: https://www.medscape.com/viewarticle/936937 https://www.medscape.com/viewarticle/936937 > [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.)
rtp 6y ago
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.
xivzgrev 6y ago
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.
- SomeoneFromCA 6y ago
  Good old flu is not a joke either.
- s1artibartfast 6y ago
  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
donor20 6y ago
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 need to have more makes life a lot harder.
notabee 6y ago
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. 1. https://www.sciencemag.org/news/2020/09/hidden-immune-weakness-found-14-gravely-ill-covid-19-patients https://www.sciencemag.org/news/2020/09/hidden-immune-weakne... 2. https://www.med.upenn.edu/autoimmuneneurology/nmdar-encephalitis.html#:~:text=Anti%2DNMDA%20receptor%20encephalitis%20is,NMDA%20receptors%20in%20the%20brain https://www.med.upenn.edu/autoimmuneneurology/nmdar-encephal....
subsubzero 6y ago
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.
- beagle3 6y ago
  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”
- magicnubs 6y ago
  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.
bigirondba 6y ago
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.
tedunangst 6y ago
Lots of these articles. Just search for "[newspaper name] covid long haulers". June 11: https://www.washingtonpost.com/health/2020/06/11/coronavirus-chronic/ https://www.washingtonpost.com/health/2020/06/11/coronavirus... July 1: https://www.wsj.com/amp/articles/three-months-in-these-patients-are-still-ravaged-by-covids-fallout-11593612004 https://www.wsj.com/amp/articles/three-months-in-these-patie... Sep 7: https://www.nytimes.com/2020/09/07/health/coronavirus-mental-health-long-hauler.amp.html https://www.nytimes.com/2020/09/07/health/coronavirus-mental...
nkingsy 6y ago
The money quote is that most of these long haulers are healthcare workers who were exposed to very high viral loads.
y-c-o-m-b 6y ago
> “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.
cicero 6y ago
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.

142 points by elorant 6y ago

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?

arbitrage 6y ago
> Am I long-hauler now? no, because this article is about covid-19, not the rhinovirus. you are offering debate in bad faith.
- oxymoran 6y ago
  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.
  - cmendel 6y ago
    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.
TFortunato 6y ago
Did you read the article? They didn't say it was unique to Covid-19, and literally brought up long-term effects of SARS in some patients.
- twic 6y ago
  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: https://www.theatlantic.com/health/archive/2020/09/covid-19-heart-pandemic-coronavirus-myocarditis/616420/ https://www.theatlantic.com/health/archive/2020/09/covid-19-...
AriaMinaei 6y ago
> SARS (Swine Flu) SARS is a coronavirus and Swine Flu is an influenza. https://en.m.wikipedia.org/wiki/Severe_acute_respiratory_syndrome https://en.m.wikipedia.org/wiki/Severe_acute_respiratory_syn... https://en.m.wikipedia.org/wiki/Swine_influenza https://en.m.wikipedia.org/wiki/Swine_influenza

arbitrage 6y ago

> 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.”

latchkey 6y ago

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. https://www.facebook.com/groups/COVID19survivorcorps/ https://www.facebook.com/groups/COVID19survivorcorps/

nso 6y ago
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.
- libertine 6y ago
  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.
  - latchkey 6y ago
    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.

neap24 6y ago

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".

SpicyLemonZest 6y ago

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?

SlipperySlope 6y ago

Gain of Function virus research is evil.

codingdave 6y ago

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.

ywhjaknskkkw 6y ago
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.
deleted 6y ago
[deleted]

dcolkitt 6y ago

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.

bob33212 6y ago
Also sounds like Fibromyalgia. "Onset: Middle Age, Treatment: Healthy Diet,Exercise, Sleep" https://en.wikipedia.org/wiki/Fibromyalgia https://en.wikipedia.org/wiki/Fibromyalgia
NationalPark 6y ago
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.
- SpicyLemonZest 6y ago
  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.

mrfusion 6y ago

Chronic Lyme, fiber myalgia, and chronic fatigue are also mysterious illnesses that many people struggle with.

wesleywt 6y ago
All of those are not caught from the air.

vwat 6y ago

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. https://naviauxlab.ucsd.edu/ 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 problem myself, which is a huge story, but coincidentally I found that the ketogenic diet completely cured me which, because my illness fell into an established and unambiguous field of medicine, was totally inexplicable. So I went down the rabbit hole which led me to see that the ketogenic diet is extremely potent anti inflammatory, is useful for curing many other things, and that there is a medical revolution in the pipes regarding inflammation and metabolics, the implications of which I am not sure anyone is ready to reconcile with. https://youtu.be/06e-PwhmSq8 https://youtu.be/06e-PwhmSq8 — Mast cells are immune cells that contain many different kinds of molecules, one of which is the famous “histamine.” These cells release these molecules in response to immune signals. Their chemicals are not understood. It is scientifically proven that (in mice I think) wounds cannot heal without mast cells present. This shows you how broad their function is, and opens even wider the possibility of very complicated and unintuitive problems resulting from their dysfunction. Mast cells are present in the heart, the emotional centers of the brain and many other places. You will notice that many long haulers report tachycardia, depression and anxiety.

mherdeg 6y ago

Paul Offit had some ideas about this in a recent interview: https://www.medscape.com/viewarticle/936937 https://www.medscape.com/viewarticle/936937 > [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.)

rtp 6y ago

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.

xivzgrev 6y ago

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.

SomeoneFromCA 6y ago
Good old flu is not a joke either.
s1artibartfast 6y ago
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

donor20 6y ago

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 need to have more makes life a lot harder.

notabee 6y ago

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. 1. https://www.sciencemag.org/news/2020/09/hidden-immune-weakness-found-14-gravely-ill-covid-19-patients https://www.sciencemag.org/news/2020/09/hidden-immune-weakne... 2. https://www.med.upenn.edu/autoimmuneneurology/nmdar-encephalitis.html#:~:text=Anti%2DNMDA%20receptor%20encephalitis%20is,NMDA%20receptors%20in%20the%20brain https://www.med.upenn.edu/autoimmuneneurology/nmdar-encephal....

subsubzero 6y ago

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.

beagle3 6y ago
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”
magicnubs 6y ago
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.

bigirondba 6y ago

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.

tedunangst 6y ago

Lots of these articles. Just search for "[newspaper name] covid long haulers". June 11: https://www.washingtonpost.com/health/2020/06/11/coronavirus-chronic/ https://www.washingtonpost.com/health/2020/06/11/coronavirus... July 1: https://www.wsj.com/amp/articles/three-months-in-these-patients-are-still-ravaged-by-covids-fallout-11593612004 https://www.wsj.com/amp/articles/three-months-in-these-patie... Sep 7: https://www.nytimes.com/2020/09/07/health/coronavirus-mental-health-long-hauler.amp.html https://www.nytimes.com/2020/09/07/health/coronavirus-mental...

nkingsy 6y ago

The money quote is that most of these long haulers are healthcare workers who were exposed to very high viral loads.

y-c-o-m-b 6y ago

> “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.

cicero 6y ago

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.