9 ms·

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 con

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.
  - NationalPark 6y ago
    Check out TWiV (https://www.microbe.tv/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.
    - charwalker 6y ago
      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.
      - NationalPark 6y ago
        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.
  - btilly 6y ago
    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".
    - irq11 6y ago
      And what did he say? ”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.
TaupeRanger 6y ago
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.
- neuronic 6y ago
  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.
  - nucleardog 6y ago
    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.
irobeth 6y ago
(Anecdote!=data and all) 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?
- codezero 6y ago
  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... https://aaroniba.net/how-i-cured-my-rsi-pain https://aaroniba.net/how-i-cured-my-rsi-pain
  - neuronic 6y ago
    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.
deleted 6y ago
[deleted]
jupp0r 6y ago
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.
tr352 6y ago
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.
dv_dt 6y ago
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.
- legerdemain 6y ago
  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.
codezero 6y ago
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... My doctor told me to cut out salt LOL.
- legerdemain 6y ago
  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.
  - codezero 6y ago
    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.
surfsvammel 6y ago
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.
- watwut 6y ago
  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.
vmception 6y ago
anecdotes are data. 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.
- nickthemagicman 6y ago
  Anecdotes are data. The state of liberal science.
  - vmception 6y ago
    A grabber sentence is a literary concept that includes a rhetorical generalization used as a pathway into argument. That part worked, pretty predictably, but it doesn’t seem like you read the argument. Hm.
    - nickthemagicman 6y ago
      Grabber for who? People who don't understand science?
  - leptons 6y ago
    "many people are saying" The state of conservative truthiness.
  - richardthered 6y ago
    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.
    - nickthemagicman 6y ago
nend 6y ago
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.
- dcolkitt 6y ago
  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. [1] https://medium.com/wintoncentre/why-doctors-are-bad-at-stats-and-how-that-could-affect-your-health-e870d551bcfe https://medium.com/wintoncentre/why-doctors-are-bad-at-stats...
  - nend 6y ago
    >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.
wesleywt 6y ago
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.
snowwrestler 6y ago
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.
ghufran_syed 6y ago
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.
- charwalker 6y ago
  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.
WhompingWindows 6y ago
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.
- saltcured 6y ago
  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?
puranjay 6y ago
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.
Itaxpica 6y ago
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.
- just-juan-post 6y ago
  We're not saying it doesn't exist. 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.
  - faitswulff 6y ago
    > On the other hand sharing them spreads fear and, indirect, mis-information about the potency of the virus. And what if it’s information and not misinformation? And what if the public should be scared?
    - just-juan-post 6y ago
      They should not be. 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 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.

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.
- NationalPark 6y ago
  Check out TWiV (https://www.microbe.tv/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.
  - charwalker 6y ago
    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.
    - NationalPark 6y ago
      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.
- btilly 6y ago
  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".
  - irq11 6y ago
    And what did he say? ”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.

TaupeRanger 6y ago

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.

neuronic 6y ago
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.
- nucleardog 6y ago
  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.

irobeth 6y ago

(Anecdote!=data and all) 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?

codezero 6y ago
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... https://aaroniba.net/how-i-cured-my-rsi-pain https://aaroniba.net/how-i-cured-my-rsi-pain
- neuronic 6y ago
  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.

deleted 6y ago

[deleted]

jupp0r 6y ago

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.

tr352 6y ago

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.

dv_dt 6y ago

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.

legerdemain 6y ago
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.

codezero 6y ago

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... My doctor told me to cut out salt LOL.

legerdemain 6y ago
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.
- codezero 6y ago
  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.

surfsvammel 6y ago

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.

watwut 6y ago
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.

vmception 6y ago

anecdotes are data. 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.

nickthemagicman 6y ago
Anecdotes are data. The state of liberal science.
- vmception 6y ago
  A grabber sentence is a literary concept that includes a rhetorical generalization used as a pathway into argument. That part worked, pretty predictably, but it doesn’t seem like you read the argument. Hm.
  - nickthemagicman 6y ago
    Grabber for who? People who don't understand science?
- leptons 6y ago
  "many people are saying" The state of conservative truthiness.
- richardthered 6y ago
  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.
  - nickthemagicman 6y ago

nend 6y ago

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.

dcolkitt 6y ago
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. [1] https://medium.com/wintoncentre/why-doctors-are-bad-at-stats-and-how-that-could-affect-your-health-e870d551bcfe https://medium.com/wintoncentre/why-doctors-are-bad-at-stats...
- nend 6y ago
  >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.

wesleywt 6y ago

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.

snowwrestler 6y ago

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.

ghufran_syed 6y ago

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.

charwalker 6y ago
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.

WhompingWindows 6y ago

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.

saltcured 6y ago
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?

puranjay 6y ago

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.

Itaxpica 6y ago

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.

just-juan-post 6y ago
We're not saying it doesn't exist. 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.
- faitswulff 6y ago
  > On the other hand sharing them spreads fear and, indirect, mis-information about the potency of the virus. And what if it’s information and not misinformation? And what if the public should be scared?
  - just-juan-post 6y ago
    They should not be. 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 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.