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Respectfully, no. I had Covid-19 in March 2020 and had long covid and... "just suck it up and push through" is basically the worst possible advice. Saying it causes fatigue just doesn't describe how utterly disabling it can be. I would get tired walking from my bedroom to the kitchen and I live in a small apartment. When I would push through, I'd be bedridden for days after. Seriously! We're talking too exhausted to have Netflix on in the background, not even watching it. I'm sure it's not psychosomatic because this was all new at the time, and I was far too exhausted for months after to even just surf the Internet.

The most disabling part of the illness was learning that I can't just "push through" without paying for it for days afterwards. For months after, a single beer and a big meal would lay me out. You don't usually think of digesting food as strenuous, but in my weakened state, I'd start seeing stars and almost black out.

Now, it would be easy to dismiss me, blame me for not being healthier, but when young athletes who are fit have having these symptoms, and doctors (with better access to healthcare then I) are recording their own symptoms as scientists, it's not made up.

The worst part of having long covid is people (including doctors!) who don't believe long covid is real. Thankfully for long covid, there are biomarkers that can be tested for now so unbelievers don't have to take it on faith. After the medical gaslighting I've experienced, I really feel for people that suffer from fibromyalgia or other mysterious un-seeable maladies that there are not tests for.

I believe that what you describe is your genuine experience. For you, long-covid has been a very big deal.

That wasn’t really the question though. The question isn’t, is long-covid a gut punch to anybody? It sure does seem to be so. The question is how many people is it affecting very badly, and is it radically different than other post-viral syndromes like flu sufferers have?

Im trying to put the risk profile in proper context that I can understand.

If for example ordinary influenza has an effect as bad as yours in say 1 in 500,000 patients, and Covid has an effect like that in say 1 in 400,000 patients, we can start to put the risk into a proper context that people can understand. That’s the type of clear and digestible comparison that I think we’re missing.

>Self-reported symptoms of the disease persisted for 1 to 2 months after initial diagnosis in up to 13% of patients; 4.5% experienced symptoms beyond 2 months, and 2.6% for 3 months or longer, according to mobile app data from U.K., U.S., and Swedish populations.

>In potentially more reliable clinic-based assessments, 33% to 98% of survivors have symptoms or complications for at least a month.

https://www.medpagetoday.com/infectiousdisease/covid19/94524

This doesn’t really answer the question either. The severity sought is absent. The bigger issue though is self-reported symptoms of disease are present in over 50% of people who never had the disease, in other similar studies.

Clinic-based symptoms or complications for at least a month means those individuals were monitored for at least a month, which leaves out everyone I know who had it and lived.

That doesn't mean anything. I had a bad cold back in early 2019 and some symptoms persisted for more than a month. So what.

> Self-reported

And how many of them were in a dire need of attention?

What markers are those? If possible, with links, please.

https://www.medicalnewstoday.com/articles/study-identifies-t...

> In a recent study, researchers from several universities and centers, including the University of Washington, the Institute for Systems Biology (ISB), and Swedish Medical Center in Seattle, discovered that four biological factors might help predict whether a patient goes on to develop long COVID.

Guess you were unlucky and your immune system couldn't fight it off.

I didn't even notice covid.

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.

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.

Regarding awareness, I meant more societal awareness such that we might direct funding towards it as we have done with cancers.

> 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.

So, it’s not always quite so simple.

Pedant's note: the phrase is "du jour", French for "of the day".

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.

In case you're curious about Long Covid vs Long Flu https://journals.plos.org/plosmedicine/article?id=10.1371/jo...

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.

You’re not wrong, I don’t know why you’re being voted down. You’d need a double-blind study for these results to be reliable.

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.

You ask a good question.

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.

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.

Thank you, I have been wondering about this for a long time.

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.

Depressed people don’t want to do things, fatigued people want to do them but can’t.

Fatigue can be a symptom of depression.

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.

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.

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:

https://www.youtube.com/watch?v=2Zzo4SJopcY https://www.youtube.com/watch?v=vN30emwcNS4

There is no strong evidence that an mRNA vaccine going into a vein causes any long term damage to anything.

And when the vaccine starts in your arm it eventually gets to the heart anyways.

We don't have strong evidence, but one animal study found that injecting the vaccine into a vein increased the risk of heart damage.

https://pubmed.ncbi.nlm.nih.gov/34406358/

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.

> 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.

If this is true, why is the medical science such a dumpster fire why is nobody trying to fix it?

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.

> Medical college also filters for conformists who have a large debt to pay once out of medical school.

I don't think that is true for most of Europe.

I agree, it's lot better in Europe.

I had post-viral syndrome from glandular fever when I was ~32. It sucked. Like you, I was a wreck for 6 months. It took 2-3 years before I could exercise properly but my life was decent enough at the 12 month mark. My research at the time indicated that rates of post-viral syndromes vary by disease. Glandular fever is known to cause it in 10-20% of adults who fall sick.

> What I’m curious about is how does the frequency of “long-Covid” compare to other post-viral syndromes? Having various forms of malaise, lethargy, and other health problems after an illness is not a new phenomenon. Does this affect 1 in 100 or 1 in 100,000 people severely? How does this compare with say past flus? It’s hard to compare long Covid to anything without a basis for comparison.

Well it's only year 3 of the pandemic and we are on our 4th variant. Is it even possible to get reliable, steady long term data?

You can ballpark it based on similar viruses, long covid is CFS/ME/Dysautonomia which is known to occur after harsh viruses at a rate of around 10-20%. It's knowable in research but doctors and public institutions are very slow to pick it up. Just look at how little was done with CFS/ME and how much medical gaslighting is still going on even though very clear diagnostic tools now exist.

Could you expand on the available diagnostic tools a bit?

Retina capillaries by Berlin Cures - who make BC007.

Dr Ron Davis has a capillary check under fingernails and a metabolic check that test plasma.

Immunoassays, I forget the actual marker but done by CellTrend

Max exertion test for Post Exertional Malaise (PEM). While such a test is cheaper it could result in worsening of fatigue.

Tilt table test for POTs.

I would tend to agree that this is probably in the realm of post-viral CFIDS/ME/POTS/etc - I had nearly 10 years of dealing with fatigue/tachycardia/blood pressure issues/etc/etc/etc after an intense bout of mono and then an intense bout of lyme disease.

I haven't seen any numbers, and this general area of symptoms does get pretty blurry (and has many weird rabbitholes - for me methyl-b12 injections for a year worked amazing - for someone else? maybe not)

> What I’m curious about is how does the frequency of “long-Covid”

Doesn’t the article say 20–30% of people get some form of it, dropping by 50% for breakthrough (getting Covid despite being fully vaccinated) cases?