It is simply a fact that medicine is ill equipped to deal with generalized symptoms in the absence of obvious test results. It is also a fact that many of these symptoms are attributable to things we DO have tests for (take hyperparathyroidism as an example), leading to the perfectly reasonable assumption among sufferers that there might be a solution to their problems, if only they could figure it out, leading many to self experimentation because they have no other recourse. And of course, there is an answer for each person. In some cases it just goes away, in some cases the general advice of "try sleep and exercise" works well, but in many cases they simply can't be helped by medicine. We don't know what we don't know.
I know most people had it (mononucleosis/kissing disease) but some are way worse affected. It's a herpes virus as well, just sticking around.
When I had it, it wasn't half as bad as some class mates but way worse than others. So kinda in between. But the consequences have fucked me up for the last 15 years. My health has never been the same - including the development of long term diagnosed issues.
Had mono, felt like shit for a few weeks. Was taking painkillers just so I could swallow without feeling like I was trying to eat razor blades.
Me before those three weeks and me after is... markedly different.
Sure, I don't live the healthiest lifestyle, but I didn't life the healthiest lifestyle before either.
I haven't felt rested again since. Whereas I'd previously be up at about 9am every day of my own accord, now I'll sleep until 3 or 4 pm given the chance (i.e., no alarm set).
Unless I suddenly aged twenty years in those three weeks, it's a damn big coincidence.
So I don't mean to be rude about it but what exactly is your expertise that lends credence to your theory that all these doctors opinions (who have directly treated COVID-19 and SARS patients) should be dismissed due to your theory of Americans being fat and sedentary?
Frankly, on the surface your comments sounds like the typically dismissive HN attitude that's been persistent on this site (and the engineering sphere in general) since the on-set.
As for "doctors in France and Hong Kong", there's 10 million physicians worldwide. Pick any theory, and you'll find no shortage of doctors somewhere who endorses it. Despite what public perception, being a physician does not make one a scientist. The reality is that the vast majority of doctors do not understand basic statistics[1].
So yes, I would indeed claim that opinion of statisticians, engineers, physical scientists, economists and other fields with expertise in statistics can in many cases be as relevant, it not more than relevant than physicians. Particularly, in cases like this, when the conclusions are being made off a small signal in a large-scale dataset.
[1] https://medium.com/wintoncentre/why-doctors-are-bad-at-stats...
Sounds like nitpicking to me. Dr. Fauci directly says it needs to be seriously looked at.
>“Anecdotally, there’s no question that there are a considerable number of individuals who have a postviral syndrome that really, in many respects, can incapacitate them for weeks and weeks following so-called recovery and clearing of the virus,” Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases, said in July during a COVID-19 webinar organized by the International AIDS Society.
Also in the webinar:
>"This is something we really need to seriously look at because it very well might be a post-viral syndrome associated with COVID-19".
That sounds like he finds them credible.
No one's arguing doctors are sometimes wrong. The issue is whether it's warranted to dismiss the opinions of independent experts around the world who have now seen multiple new coronavirus outbreaks, even if we don't have scientific studies on the current coronavirus outbreak.
Isn't it a good thing to show some scepticism? It's for this type of comments that I like HN.
The reality is that these things effect like .00002% of the population. But a news story shared today on the Internet can make tens of millions in the general the population think it could happen to them.
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.
If you read older literature, you see people taking months to get over things like the flu, a whole process of recuperation completely unheard of even among those who may have the affluence today to do it.
There are the outliers who may never recover from COVID, people who assign their general discontentments to it, but I suspect there is another group that maybe just needed more than a week or two to recover and are suffering the consequences of not taking it or not being allowed to take it.
Recovery was quick afterwards. But just being ill was much more than a 1-5 day event.
She's been down for 5-6 months now with recurring symptoms like fatigue and shortness of breath. She's had a very extensive health workup to exclude a number of possibilities (thyroid disorder? CMV?), but is now basically resigned to living with what amounts to moderate asthma and exercise intolerance.
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.
Coronavirus is very dangerous and worse than the flu. But we need to stop acting as if this is a population killer virus. We have a pandemic and we need to stop it but the amount of panic-inducing articles and videos is insane. We need a level-headed approach.
Make no mistake - I believe in and support the measures we take. Fully. I wear mask whenever required and even more often than that. I want to keep others safe from this virus and keeping distance/wearing a mask costs nothing. We need to stop this virus especially since it's rather novel.
BUT. And this is a big but. You have to explain to the same people who shut down their shops a few months ago and might have to do so again that we are tanking the economy on purpose (Germany in my case).
This will also cost lives. It's just harder to make that connection but people will die as a result of lockdown measures. Why is death by Corona less okay then death by shitty economy and its effects? What is this weird disregard for other deaths when compared to Corona? Because it's more tangible?
All kinds of metrics are telling us that poor economic performance and economic depressions are directly correlated with increased deaths, e.g. suicides or simply shittier healthcare.
It's just impossible to openly talk about this without causing a demon rampage.
And what if it’s information and not misinformation? And what if the public should be scared?
Infection Fatality Ratios for COVID-19 Among Noninstitutionalized Persons 12 and Older: Results of a Random-Sample Prevalence Study
Sept 2020, Annals of Internal Medicine, study in Indiana, USA
https://www.acpjournals.org/doi/10.7326/M20-5352
People aged 40 or below have a .01% chance of dying.
People over the age of 70 have a 1.17% chance of dying.
Overall the chance of dying from the virus is 0.26%.
I encourage you to share this information.
Furthermore, the more people that have it, the more out of control it will be. Obviously. And while on average your chances of death or debilitation are low, it will have outsized effects on minorities, frontline workers, and other groups. You're not just rolling the dice on your own health, you're doing so with the health of everyone you interact with as well.
> Although nursing home residents were not tested, they represented 54.9% of Indiana's deaths. Thus, we excluded nursing home residents from all calculations (that is, deaths and infections).
The question is: Is her condition chronic? That is, given a good treatment, diet, and specific exercise, could she return to normal? What did she do after recovery?
The very first doctor quoted is Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases. You might want to reconsider that "None".
”Anecdotally, there’s no question that there are a considerable number of individuals who have a postviral syndrome that really, in many respects, can incapacitate them for weeks and weeks following so-called recovery and clearing of the virus,”
in other words, he’s acknowledging that these people exist and are reporting something. He’s not saying anything about the validity of their claims.
You can add to that the many scientific publications cited about what fraction of people seem to encounter these symptoms and what symptoms they are. While I agree that self-diagnosis by hypochondriacs will lead to a lot of anecdotes not based in reality, there is also plenty of evidence that there is a real issue here as well.
Right, which is still pure speculation. And by the way: CFS is a diagnosis of exclusion. The man is obviously not validating that thousands of people have an illness based on anecdotes. That would be a sure way to lose his medical license.
” You can add to that the many scientific publications cited about what fraction of people seem to encounter these symptoms and what symptoms they are.”
So far, that number is “zero”.
There have been no publications showing any evidence that “these symptoms” occur at any rate above baseline in the population. If any existed, sure they’d have mentioned them in this article?
There have been a few publications suggesting cardiac involvement in a small number of patients. To date, most of these have been withdrawn or debunked. Beyond this, the “publications“ on “long-haul Covid” consist almost exclusively of self-reported symptom data from people who self-select for feeling crummy.
But I am always interested in evidence, and I welcome you to cite the research upon which you’re basing your conjecture.
That doesn't seem like "zero" to me.
Furthermore note that the result wouldn't be surprising. Long-term followup on SARS finds that 15 years after being infected, 4.6% still had visible lesions in the lungs and 38% had reduced diffusion capacity. Given that, the claim that a significant minority (eg > 5%) of people with COVID-19 should still have significant symptoms after several months seems quite plausible.
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?
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.
Have you read the studies linked? How would you even suggest control groups are used for the studies mentioned -- they are case-series, which is a legitimate form of scientific research that doesn't use controls. These are COVID-19 patients who were hospitalized who continue to have symptoms for months. There is not a treatment we are testing here, which would be an RCT and would include a control-arm.
If you're thinking of case-control study, that'd be nice here, however it requires a retrospective lookback where you find cases like the above case-series reports have just done, but you then have to find a bunch of other COVID-19 patients from the same hospital/demographic group to then compare over time with the cases. This sort of study takes time and there's no way it could've been completed yet, as we are just uncovering the phenomenon now with case series. So, if these scientists are doing their job, they will follow-up and do the case-control lookback studies, though they won't be out for 6-12 months.
The science here is working as intended. Case series are always going to be the first out of the gate, it was that way with HIV/AIDS in SF, and it appears that it's that way with COVID-19 long term complications. It's not just "forums" as you stated it, there are real case-series articles published on this phenomenon.
For example, the circumstances of this pandemic have notably increased anxiety and depression rates as well as increasing stress. How many people might have symptoms like fatigue, brain fog, aches, and other inflammation explainable just by this stressful environment even without viral exposure?
I've lost 30 pounds and haven't started exercising or dieting in any meaningful way. My appetite is much weaker than it was before and I am usually hungry now, but don't have a strong desire to eat until I'm deeply hungry.
It's pretty wild how spot on you are about the healthiness in general - I was living a very unhealthy life - high blood pressure etc...
My doctor told me to cut out salt LOL.
My sleep went from 8 hours a night to 6, at best. I can hardly concentrate in my apartment. It is sweltering hot and surrounded by constant noise. I've had to work longer hours to make up for the loss in productivity.
My commute used to be a pleasant bike ride. Now I am wearing a dent into the couch cushions.
I have gained 10 pounds, despite eating less. I have started running, but I don't have the time or stamina to run more than a few miles each day.
I'm married, so my roommate is my wife who also has her own separate office. I think this is huge.
You didn't ask my advice and I don't know if you care, but having been through three recessions now, I'd suggest you get out of town to somewhere with more space and freedom and take advantage of the remote work world if that's an option for you.
The other side: I'm a hermit. I actually prefer not socializing, going out, meeting people (exceptions exist), and any day-to-day routine the most people find comforting.
I think that's a larger factor in my general improvement in quality of life - and I'm dreading going back to the normal routine that we need to get back to so the rest of the world can have more stability, but nobody will empathize with me then, or now, which is OK, I'm weird.
I feel like I'd get the same distractions everywhere in suburbia (and I am in suburban Palo Alto): constant delivery vans rumbling into the yard, lawn care teams with gas-powered leaf blowers at my apartment, adjacent apartment, across the road, people who idle their pickup trucks under my windows day and night, a Roto-Rooter van that shows up to the neighbors over and over, people who shout obscenities out the window while playing COD at night, the neighbor with an outdoor punching bag, and so on.
I find even an office with an open floorplan far more peaceful and quiet. I'll take the first opportunity I can, responsibly, take to work from an office or coworking space.
By comparison, 2008 was barely a blip on the radar for me. Stressful, but I wasn't crawling up the walls the way I feel I am now.
I am lucky in Sunnyvale - I think. Way less residential noisy stuff - and the area is mostly families and is surprisingly quiet that definitely helps a lot. In an office, just given my role, I can never get away from people long enough to focus.
2008 was mostly a blip for me too - had a brief pay hit and less certainty on a job, but wasn't too scary.
I feel very much for folks like you and everyone out there who's feeling the pangs of this state of the world - hang in there!
On a population scale, one rarely has "adequate control groups" it would seem to me. What is the process of going from anecdotes to identifying a distinct population with problem to work on in epidemiology? We can't just shrug and say, it must be mistaken because there's no control group.
A popular science title from this area is The Spirit Catches You and You Fall Down, about the relationship between a Hmong family with an epileptic child and their doctors. I think it's often assigned reading for students in the medical professions.
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.
they can be used to prioritize resources to create the real study, and they are the crux of our evolutionary selection thus far.
when the former is not available, the latter has been pretty reliable for self-preservation even if the "why" isn't apparent or is completely made up conjecture.
there is no utility in lecturing on anecdotes when the complete scientific mindshare of planet is looking in different directions that may be just as irrelevant as the anecdote.
the person you replied to said that
since it has to be said, with you, that means nobody here is saying that popular anecdotes prove anything
your entire argument is based on a failure to communicate
Even in sociological surveys The surveys ask well crafted questions to avoid anecdotal information.
That part worked, pretty predictably, but it doesn’t seem like you read the argument. Hm.
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.
A few years ago, we had a massive chikungunya outbreak in my country. Nearly a dozen people in my extended family caught it, including my father. They all had severe body aches that lasted months, some even years. A professional athlete who had gone through several major sports injuries described it as the worst pain he had ever experienced.
I strongly discount comments on an internet forum.
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.