I feel like it might be more that we weren’t concerned I’m about post-viral symptoms enough in the past than that we are overly concerned with them now. ME and Chronic Fatigue and similar can be life changing (in a bad way), but are not at all well understood, often dismissed as being in peoples heads, and do not have effective treatments.
Long-covid is an increase in prevalence, and also does seem to present some unique symptoms.
> Long-covid is an increase in prevalence, and also does seem to present some unique symptoms.
Is it though? That data is exactly what the commenter above is asking for, and I've also not seen any data comparing prevalence of long covid to long-lasting side effects of other diseases.
> I feel like it might be more that we weren’t concerned I’m about post-viral symptoms enough in the past than that we are overly concerned with them now. ME and Chronic Fatigue and similar can be life changing (in a bad way)
Being in a car crash can be life changing in a bad way (if not life ending) and yet most of us choose to get in cars on a regular basis. My point is that the severity alone is not useful: you can only make an informed decision knowing both severity and the probability of a particular outcome.
Nowadays we are constantly bombarded with things fighting for our attention. Everyone is "raising awareness" for something, but as humans we are very limited in the things we can be constantly vigilent about. The only rational response is to prioritise the things that most warrant consideration, and ignore everything else.
Long covid is a particularly pointless thing to be aware of, because it's not like any sane person chooses to get covid, so the risk calculation is already two steps divorced from the actions we can actually take to avoid it.
Thank you. Analyzing this kind of data is the kind of thing I'm talking about to try and get to grips with the risk-management calculation involved.
But even if there's no medical flaws with this study, it doesn't necessarily answer the question to me because this overall point might really be more of a psychological question mark than a medical question.
If you tell people they had Covid, some portion of people who have been stressed out by the media focus may panic and mentally exaggerate post-viral symptoms based solely on the fear they feel with Covid over the flu, even if the actual medical conditions they experienced would not cause them to panic if they were told they had the flu.
I think a study that would actually illuminate here is to tell half the patients who had Covid that they actually had the flu, and telling half the patients that had the flu that they actually had Covid, and then doing a comparison on how peoples' perception of which illness they had impacted how frequently they reported symptoms. (I don't know, but I doubt that would be considered medically ethical though.) My guess is that the media focus on Covid is impacting how people choose to go to the doctor regarding post-viral symptoms and there's no real way to measure this without some unusual experimental design.
I don't have solid experimental data on this. But my own experience was that I went into the pandemic assuming that I was young (I'm 28) and that covid likely wouldn't affect me too badly, I then catch it quite early on (Apr 2020), and come out of the initial infection finding that exercise causes me heart pain and fatigue to the point that I sometimes actually fall asleep immediately afterwards (this has gradually improved over time, but is still quite restrictive on activities that I am able to do). And now almost 2 years later this is still affecting me. I wasn't expecting this at all. I was expecting to be able to continue with my life as usual.
I don't know about you, but I've never heard of a young person getting these kind of symptoms from flu. Other viruses like Glandular Fever are known to cause these kind of affects of course. Based on this I rather suspect that the reason there is more media focus on long-covid than long-flu is because covid is causing a lot more post-viral symptoms than flu does. That doesn't mean there is no media focus factor, but I don't think it's the main driver.
I think the question is: in the absence of solid experimental evidence why would you assume that the effect is psychological when post-viral effects are well documented across multiple viruses, and have been confirmed by clinical diagnoses by Doctors in thousands of covid cases.
Being skeptical until proven unequivocally is a good approach to scientific enquiry, but it is not good public policy where we must take decisions and act despite uncertainty.
I don't have objective proof of this in the sense of "2+2=4", but I think what I've been talking about in many previous posts is a logical systemic explanation and has been repeatedly observed in the last few years.
The media's business model has changed.
At one point the media's business model was based on trust. People watched a guy like Dan Rather repeatedly because they thought he seemed genuine about telling the truth. I'm sure they knew he'd have his own feelings and human biases, but they came back to him because they thought he was focused on truth and felt trustworthy.
The media's business model has changed because of technology such as the ability to measure clicks, measure the intensity of emotion, and social-media and search algorithms that promotes what gets the most activity. Once the media has the ability to essentially drive their own profit via algorithms promoting the emotionally most intense news stories and ideas that gets people sharing and watching, the fear-porn or outrage-porn of the current news cycle will become the only reality for many people.
As an example, many people went from being overly scared about Omicron and Covid-19 fear a few weeks ago, to supreme outrage about Putin and Ukraine and making that the central part of their identity without skipping a beat. And I have to note that almost nobody gave half a shit about past Russian invasions of Ukraine or Georgia until the media told them that they needed to care about this. (Not suggesting that people shouldn't care about this, but the intensity of this switch and suddenly caring about this part of the world feels notably shaped by the media promoting it this time.)
Outrage or fear porn is the new ruler of reality. The media has supreme influence in shaping peoples' perceptions, and if a study about Covid after-affects is done, I'm sure that peoples' fears that are magnified by this new media business model will have some impact in how people report symptoms. If you tell people that Covid is super-scary and long-covid is the new big concern, at least some people will feel panic and be more likely to go to the doctor and express concern over identical symptoms that they otherwise might have not cared about if they experienced it in say 2014 with a flu.
I get where you're coming from, and agree with you on the effects of media focus.
But I don't think that's a reason not to be worried about this. Reading various threads here, there are people describing pretty awful post-COVID conditions, some that seem way more severe than anything associated with post-flu conditions.
Yes, these are anecdotes. But if we believe them to be true, they should still worry us, even if the incidence is less than 1%. Because if there is even a 0.1% (or maybe even 0.01%)[0] chance that, after recovering from COVID, I might end up physically debilitated for months or years, I will absolutely change my behavior to make it less likely that I get COVID in the first place, regardless of loosening of masking and distancing restrictions. Some might consider that an overreaction, but that's my choice to make.
As you and others point out in this thread, it's not just incidence that matters; severity is important too. If I have a 0.1% chance of dying doing a particular optional activity, I would not do that activity. If instead I have a 0.1% chance of a minor injury doing that activity, I would probably still do it if it was something I believe I'd enjoy.
[0] Just to give you an idea of my own personal risk tolerance: I just did a quick search on fatalities from skydiving, and it looks like it's around 0.0002% (tandem, not solo, based on 2019 reports). That's pretty low, but still high enough for me to not be particularly interested in doing it, even though I think it would be fun. Granted, this is a very different situation than trying to avoid getting COVID.
> Yes, these are anecdotes. But if we believe them to be true, they should still worry us, even if the incidence is less than 1%. Because if there is even a 0.1% (or maybe even 0.01%)[0] chance that, after recovering from COVID, I might end up physically debilitated for months or years, I will absolutely change my behavior to make it less likely that I get COVID in the first place, regardless of loosening of masking and distancing restrictions. Some might consider that an overreaction, but that's my choice to make.
You and I have somewhat different thought-processes when it comes to thinking about risk. All other things being equal, I wouldn't want to risk even a 0.001% chance of significant problems either: but the deciding factor for me is valuing my freedom and not wanting to be scared for the rest of my life. Also, there's no guarantee that you can still avoid Covid anyway even if you do 100% of things perfectly anyway.
That said, I respect everybody's right to choose. That's one value that I hope everybody can learn to respect again.
That paper is better than most in the space, in that it has an actual control group, and there are not huge health/age differences between the populations at baseline. Nonetheless, a few interesting things about that paper that stand out to me:
1) Depression and anxiety are the most common "long covid" symptoms, by far. Even "abnormal breathing" doesn't linger to nearly the same extent (fig 1). In fact, when you look at the co-variate matrices, depression and anxiety stand out as a brightly colored axis for the "long covid" cohort (but not for flu), indicating that many/most "long covid" patients had correlated problems with depression and anxiety that aren't seen in the "long flu" group (fig 3).
2) If you look at the last figure (fig 5), it's obvious that the "long covid" symptoms are enriched in the oldest and sickest patients -- yet the main text doesn't break out these groups explicitly, and instead presents "long covid" symptoms as something equally likely to affect all. That's clearly not true. The authors could easily have done this, but did not.
3) The "long covid" symptoms include the primary disease itself (measurements start on day 1), and drops off by 3 months after diagnosis (fig 1), but the authors try to distract from this by emphasizing the group that develops symptoms at any point in the six months after diagnosis, even if they don't have the corresponding symptom in the first 90 days after infection. In fact, 40% of the people in the "symptoms within six months" cohort do not have symptoms in the first 90 days! The authors try to claim that this is proof of some kind of evolving "network" of symptoms...but ignore the simpler explanation that they're detecting "symptoms" unrelated to the original illness.
Long covid papers often make the mistake of blurring together severe, long-term symptoms with minor or unrelated ones, and mixing old people with young people. The authors here have done little to prevent either class of error. Also, looking at this, you also have to conclude that the "long covid" cohort cannot easily be separated from a group of people struggling with depression and anxiety. Are the symptoms caused by the depression? With symptoms like "fatigue" and "pain", it's quite probable.
> With symptoms like "fatigue" and "pain", it's quite probable.
I'd disagree with this. I'd argue that the causation is equally likely to go the other way. Fatigue is a well-documented symptom of multiple viral infections. And painful auto-immune induced symptoms are well-documented in post-covid patients. And who wouldn't be depressed if they can no longer work or do the activities they usually enjoy because they can't get through a day without running out of energy while they can see everyone else getting back to their normal lives.
Everything in the paper is a correlation, and correlations alone do not imply a causative relationship. Therefore, you can just as plausibly argue that the symptoms cited have nothing to do with covid. That said, there's no reason to believe that people with "long flu" (the control group) would be less likely to experience depression as a result of their lingering symptoms, but that is what is seen. And remember that depression and anxiety are more common than the other symptoms -- they're happening in the absence of other "long covid" symptoms in this cohort.
Does Covid cause depression and anxiety, or are depressed and anxious people more likely show up to the doctor seeking covid treatment? You can't tell from a study like this, but the latter is a simpler explanation, consistent with a radical, society-wide initiative that uprooted people's social structures during the study period.
Also, this:
> painful auto-immune induced symptoms are well-documented in post-covid patients.
Is not true. There is some speculation and self-reporting of symptoms, but it has not been "well documented", or documented at all.
I think the categories and the attributes assigned to them are fuzzy. That said fatigue that is attributed to CFS/ME is not just being tired, it's a whole other level, it is a crushing fatigue. CFS/ME fatigue also has clearly definable characteristics; for example Post-exertional malaise (PEM) that does not occur in depressed people unless they also have CFS/ME. In which case they're probably miscategorized.
> Long covid is a particularly pointless thing to be aware of, because it's not like any sane person chooses to get covid, so the risk calculation is already two steps divorced from the actions we can actually take to avoid it.
I disagree. While I certainly would prefer to not get COVID, I'm vaccinated and boosted, so if I do get it, my (primary) symptoms will likely be mild or nonexistent. So from the perspective of primary symptoms, I am at the point where I want to just live my life, not have restrictions, and if I get it... ok, well, I get it, no big deal. Essentially I will treat it like a cold or the flu: I would prefer not to get it, but I'm not going to change my day-to-day life in order to avoid it.
But the possibility of long COVID changes that. If long COVID is both prevalent and severe, I would choose to avoid crowds, stay home more often, continue masking and social distancing even when/where my local health guidelines don't require it, etc.
>the risk calculation is already two steps divorced from the actions we can actually take to avoid it.
This is wrong. Many of us are in a position to avoid getting covid with high probability, at the heavy cost of a complete sacrifice of an offline social life. Long covid heavily affects the expected QALY loss calculation, so it's of enormous material interest.
>it's not like any sane person chooses to get covid
I know lots of insane people then. They say things like "Omicron is mild so I decided it was a good time to get it" - by which they meant they would stop paying the cost to avoid it (and predictably contracted it immediately). They might have decided differently if it turns out that long covid is a) common and b) life-wrecking.
> Even if prevalence per case is the same as flu; covid would still at least double the overall societal prevalence due to it being in addition to flu.
This sounds true if you don’t think long and hard about it, but actually the mechanics of viral spread are not quite that simple. For example there’s the phenomenom of interferon-mediated “viral interference” where infection with virus X wards off infection from virus Y (say, the influenza strain de jeur), which is thought to be attributable to acute upregulation of the innate immune system.
I sure hope that medical research funding decisions are driven by medical experts looking at data, not by any level of societal awareness (positive or negative).
A lot of medical funding is from charities like Cancer Research which get their money from the general public. Public awareness plays a big part in which of these charities get funding.
The major problem we have is that covid affect many organs including the heart.
This lead to cell death and regeneration all over, but with the aging of the organs affected.
In the case of the heart, there is almost no regeneration, mostly scarification. That mean the even young persons not feeling bad from covid could lose years of heart health.
The same apply to the mRNA vaccine if it is injected in a vein by error and goes to the heart.
Omicron seems to stay more in upper respiratory and thus being of less concern.
There is a bunch of things people can do to increase their chances of it being mild:
This isn't scientific evidence, but a possible relevant anecdote that potentially explains some of this. I had a very close friend working some kind of support role at one of the big Covid injection sites in a big US city.
I was told that at least some portion of the many nurses hired to do the vaccine injections appeared to have very little experience with that type of injection and weren't following the set procedures setup by the head doctor of the center. Because of the rushed nature of setting up the vaccination center, the hiring was rushed and the training was limited and the quality control and supervision was pretty bad.
I have a feeling that at least some of the reports of vaccine injuries may have just been caused by improper injection technique due to the rushed process.
Because that is essentially the state of affairs in all human endeavors. Medicine is more prone to it, because they can always claim a new 'variant' or exception to the rule when a treatment/intervention does not work. Medical college also filters for conformists who have a large debt to pay once out of medical school.
Long-covid is an increase in prevalence, and also does seem to present some unique symptoms.