> Is it too much to just admit that you don't have enough evidence to decide whether it's real instead of trying to write claimants off as grifters or mentally ill?

The fundamental problem is that essentially all of the "science" around Long Covid is abysmal -- phone surveys and uncontrolled, retrospective analyses of medical billing codes; many don't even bother to check if the respondent had Covid -- and the few studies that actually do achieve any level of rigor have read out negative results.

For example, the NIH ran a controlled, longitudinal study where they ran a battery of tests on 189 people confirmed to have Covid, and 120 controls...and found nothing objective that would define a disease state. This tweet thread does a great job of summarizing the results, and where the good science on Long Covid mostly stands at the current time:

https://twitter.com/awgaffney/status/1528876982754476032

We don't generally accept someone's self-reported illness without objective verification. It's too easy to do harm, and hypochondria is a real thing. Does that mean that Long Covid doesn't exist? No, of course not (among other things, post-hospitalization syndrome is a real thing! People who spend time in the hospital generally take time to get better!)...but it also doesn't mean that we should accept silly headlines and hyperbolic claims at face value.

Even the definition of the disease is abysmal: "continuation or development of new symptoms three months after the initial SARS-CoV-2 infection", a post hoc ergo propter hoc diagnosis.

And "the main symptoms are a shortness of breath, fatigue and weakness, depression, anxiety, and symptoms associated with memory difficulties." I have several of those symptoms and I never even had Covid. In my case, I blame aging and inactivity, but if I had caught Covid, I could probably get a diagnosis of Long-Covid.

Study any population of people "over 60 or with co-morbidities" in any three month period and you'll find people who develop those symptoms at that time. So as you said, it's really important to have properly controlled studies to isolate the effect of Covid.

LongCOVID is a persistent viral infection. Most RNA viruses that afflict humans are persistent (like Hepatitis). Right now, zero dollars are being invested in developing the diagnostics required to detect the virus. Thus, an irrefutable test is not available. Note that SARS and MERS patients also longhauled. If you look at other species, a coronavirus (FIPV) can infect cats in a chronic fashion. In fact, Feline Infectious Peritonitis Virus is treated with the *exact* same antivirals as COVID. It is incredibly difficult to detect FIPV in cats due to irregular shedding by the virus. There are now dozens of papers that have detected SARS-CoV2 viral RNA and viral proteins in longhaulers up to 12+ months after the initial infection.

HIV initially causes a flu like illness in over half of individuals who contract the virus. These symptoms clear. The virus is still in the body and, untreated, results in AIDS and ultimately death.

> LongCOVID is a persistent viral infection.

No, this is an opinion, not a fact.

> Most RNA viruses that afflict humans are persistent (like Hepatitis).

No. The genome structure of a virus an orthogonal property, and extrapolating that "this is an RNA virus, therefore it must cause latent infection" is wrong.

Just to underscore the point: the most common examples of latent human infection -- HSV1 & 2 -- are double-stranded DNA viruses. HIV also causes latent infection, but has a completely different RNA structure.

It's like saying, "a car has an engine, a plane also has an engine, therefore I can fly in my car".

> Right now, zero dollars are being invested in developing the diagnostics required to detect the virus.

Also false. PCR is exquisitely sensitive. There is approximately zero chance that we could fail to detect latent viral infections with PCR, and many, many labs are working on this. The NIH just funneled something like a billion and a half dollars into "Long Covid research", and you can bet that diagnosis is a big part of this.

I have read at least a half-dozen papers in the last two years where people tried to find "latent" SARS CoV2 in various body tissues. If we aren't seeing latent infection, it's not because nobody is trying to find it.

> If you look at other species, a coronavirus (FIPV) can infect cats in a chronic fashion.

The fact that some unrelated virus in another species exhibits latent infection is...unrelated. You're leaping to conclusions.

> It is incredibly difficult to detect FIPV in cats due to irregular shedding by the virus.

When a viral infection is in its latent form, it's latent, and isn't causing active infection. So yes, it's hard to detect, but it also shouldn't be causing symptoms.

You don't get to have it both ways: claiming that the virus is so rare and hidden that we can't find it with molecular tools capable of finding a single copy of RNA, and simultaneously claiming that it's causing systemic, disabling illness. Both things cannot be true at the same time.

> Most RNA viruses that afflict humans are persistent (like Hepatitis)

RNA viruses:

- rhinovirus (common cold) - influenza - norovirus - RSV - rotavirus - human metapneumovirus

most respiratory and GI viruses that people commonly get are RNA viruses.

> The virus is still in the body and, untreated, results in AIDS and ultimately death.

that's just dumb.

It’s usually political: Trump and other right-wing politicians (e.g. Bolsonaro) took an early position that COVID wasn’t a serious risk when the economic cost became clear. That created a cottage industry of people downplaying the risks or hoax cures, all with the underlying desire to return to business as usual circa December 2019. When Trump lost the election, that also created a second wave of people trying to spin the pandemic as a conspiracy to steal the election by making him look bad.

If you look at that guy spamming this thread up, he identifies as a Republican and appears to repeat whatever the current talking points are.

I do think some people are quick to dismiss it.

Though I must admit that I'm also not quite sure what is happening here. The problem seems to be very much real, but the link to Covid is tenuous.

The only symptom with a plausible causal link is the shortness of breath, and most symptoms of long-covid are the kind of psychosomatic symptoms that, while real, could be a symptom of something else and may have been exacerbated by a heavy illness, rather than caused by it.

The other problem is the lack of people not infected by Covid. Pretty much everyone close to a burn-out would experience increasing fatigue, weakness, depression with a very sharp increase at the point where they may have gotten hit by Covid. A bit like how spring always seems to arrive suddenly, simply because an average increase temperature happened to coincide with a sudden change in weather.

The lack of any common treatment or known causal link makes it very tricky to get a grasp of the situation. So far the only thing that I think is well established is that it is a problem, but I'd really like to know more about how it came about and what can be done about it.

> The only symptom with a plausible causal link is the shortness of breath

That seems quite presumptious given that there is clear evidence that covid attacks organs other than the lungs (such as the heart and kidneys). Chronic fatigue is also well-established as a post-viral syndrome following other viral infections, and even though we don't understand what causes it.

The problem is we all know people who act disabled from a skinned knee, and that behavioral pattern takes many forms.

You are making a claim, probably similar to "I scraped my knee badly and it was fine, so how can someone scrape their knee in a similar way and be in agony?"

You are making assumptions that pain is objective, not subjective. A knee physically scraped in the same way will have the same levels of pain. I don't see any reason to believe that.

I could easily see the same injury on two different people resulting in different levels of pain. I could also see a kid who's parents pushed them off a bike in an act of abuse resulting in a knee scrape re-experiencing the emotional trauma of the abuse through the physical pain of the knee. I could also see an injury in the same spot over time turn into something debilitating.

I don't deny that there are people who take advantages of bad sets of incentives, but there are also people who aren't taken seriously because people look at the incentives involved and say they must be faking it.

I don't think it's just to punish the innocent along with the guilty.

I'm making no such claim.

I'm saying because there's a non-zero percentage of the population that has learned to milk playing the victim, the rest of the population tends to look at ambiguous self-reported ailments like long covid with suspicion.

It's not for me to say if long covid is real or not, I'm just noting the social problem with this situation and why many people are so dismissive.

there are definitely people with symptoms that could be described as long covid; there are many others who are pathological hypochondriacs that latch onto whatever is floating around the memetic ecology that explains the physical manifestations of their distress and anxiety

It may be that that ultimately proves to be the most likely explanation, but I strongly disagree with the level of certainty you're attaching to that claim in this case.

The correlation with anxiety disorders makes me highly skeptical of long COVID claims:

> “We were surprised by how strongly psychological distress before a COVID-19 infection was associated with an increased risk of long COVID,” said Siwen Wang, a researcher in the Department of Nutrition at Harvard Chan School who led the study. “Distress was more strongly associated with developing long COVID than physical health risk factors such as obesity, asthma, and hypertension.”

https://news.harvard.edu/gazette/story/2022/09/depression-an...

It is well known that psychological distress can weaken the immune system making individuals less able to clear a novel virus.

surely this should be reflected in mortality rates, then, right? and yet...

I've seen long COVID, my workmate would be fine then faint all of a sudden for a fortnight or so after he was off with the coof.

I myself had a lot of breathing issues for a week or two after I had it, took me a month to get back into the swing of the gym.

That being said, I've never seen anyone hit hard for more than a week or two. So I don't really know what to think here, but I have noticed that interest groups seem hellbent on riding this disease all the way into big funding grants and political power.

A week or two wouldn't generally be considered Long Covid I don't think. That would just be extended acute symptoms.

As one anecdotal data point: I'm 29, and was a previously fit (would regularly play sport, go for long hikes / bikes rides, etc), and I haven't been able to recover that fitness nearly 3 years later. I was not expecting this (I had covid early on in April 2020 before there was much talk of long covid), but I found that my endurance was greatly reduced post infection (I essentially get the same fatigue that anyone would get once they've completely exhausted themselves through strenuous exercise, just much, much quicker and with exercise that shouldn't be exhausting me). And when I have tried to push myself to regain fitness made those symptoms worse not better (after pushing myself, I could barely get out of bed for a couple of days - I've tried this 2 or 3 times).

I'm lucky in that I can still do every day tasks (work, shopping, etc) just fine. Some people with more extreme symptoms can't even manage that.

How many? So many. And that’s not just my opinion; it’s my strongly held opinion

I think people are very attached to the thought of everything being ok.

Look: for every problem in the world (and in your city, and in your neighborhood, and in your family), there are people who just don’t want to hear it.

They’re generally not the same people from problem to problem, but there’s always a bunch of them. They have their own problems, their own hangups, their own way of seeing the world, etc. They have a thousand totally personal and idiosyncratic reasons. And the easier it is to dismiss the problem, the more staunchly they’ll do so.

It just so happens that autonomic body issues and subjectively assessed complaints are very easy to dismiss because they’re really nebulous and sometimes genuinely psychogenic or iatrogenic. So the people who just don’t want to deal with this problem right now have a really easy time taking a pass on it.

That’s the way it’s gone for hundreds of years and will go for hundreds more. Getting yourself caught up in frustration or confusion over those people isn’t going to do you a lot of good.

If you care about this problem, help people who are suffering from it or work with other people who care about with you. Don’t worry about the people who don’t. They’re not going anywhere.

>At the very least, this warrants taking claims of long COVID seriously, does it not?

Well clearly those Ebola survivors are also grifters who are 'just depressed'.

It's grifters and depression all the way down!

/s

The onus is on the people making the claim to prove its real.

So far theyve collected information on it so negligently it should really just be called data fraud. Pretty obvious whats happening when thats the case.

I recommend that you read up on the history of the last large scale viral infection that greatly impacted society - HIV - and how slowly the medical community accepted the illness and the gaslighting that happened to patients.

Long covid can be measured directly or indirectly in a blood sample? Please provide literature on that.

The simple answer? It’s too scary and nebulous for most people to handle - so they attack and deny it.