The NIH has poured $1B into long Covid research, with little to show for it | Hacker News Reader

The NIH has poured $1B into long Covid research, with little to show for it

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149 pointsbelltaco168 comments

I suggest you read the article—it may not be what you think from the headline.

It’s not that NIH didn’t find a cause of “long COVID”…it’s not that they didn’t find any treatments for long COVID if such a thing truly exists…the NIH just did a whole lot of nothing.

The National Institutes of Health hasn’t signed up a single patient to test any potential treatments — despite a clear mandate from Congress to study them. And the few trials it is planning have already drawn a firestorm of criticism, especially one intervention that experts and advocates say may actually make some patients’ long Covid symptoms worse.

Instead, the NIH spent the majority of its money on broader, observational research that won’t directly bring relief to patients. But it still hasn’t published any findings from the patients who joined that study, almost two years after it started.

A really spectacularly expensive whole lot of nothing.

Sounds like they are a consulting group.

Oddly enough that complaint doesn’t show the money was wasted, yet.

Some studies really do take longer than 2 years and wait to publish data. As much as people complain about CEO’s focusing on the next quarter’s profits they still seem to want quick results.

That said, most of the money was probably wasted.

Lets look at both sides of the coin here - this is research, it isn't meant to be quick. Throwing lots of money into research is about letting lots of people try to tackle a problem to find the 1 person in the ignorant, seething mass of average humans who happens to know how. It is expected that most money on research will be wasted funding people who, in hindsight, had no idea and were doing something that was in fore- and hind- sight obviously not going to work [0].

Although, that said, I do want to stand up for the anti-government argument here. The NIH isn't going to be as effective as a private market at identifying who is effective. Everyone is affected by COVID, it isn't like they need to force people with money to take an interest in what is happening here. Ironically, although the NIH is effectively throwing people at a problem here to play the odds, we'd probably find that a private organisation is much better at it by similar logic. I'd keep an eye on the Bill & Melinda Gates Foundation myself, Gates seemed to be quite busy through COVID. Similar efforts by other wealthy people are also likely to be happening.

[0] Vulcanization is a fun example. Both in fore- and hind- sight the experiment didn't work. Dude just happened to be clumsy.

The objection isn't that they're trying things that won't work, it's that they're not trying things. An example would be pointing out that other studies which obtained funding almost 2 years years later than the NIH have already recruited a panel of patients.

I'm all for being deliberate and getting things right, but if your procedures are so elaborate that you're not getting anything done, maybe they're flawed.

This is what I would call "the Google special" - infinite process, barely incremental progress, languishing public results

Why is the NIH going to be less effective than the private market at allocating research funding? Funding scientific research is a great example of a problem markets don't solve well for the exact reasons you describe. Most research doesn't lead to tangible progress (or financial reward) not because the researchers are all idiots, but because you have to try a bunch of things and a lot of them won't work, especially with poorly understood novel phenomena. Markets will instead allocate funding to the least-adventurous surest bets. That argument aside, when you allow wealthy people to dictate the direction of scientific research, you're essentially subsidizing their individual research preferences using public money (the wealthy get to take a tax deduction for contributions to their foundations).

Because the payoff isn't in the result, it is in the initial grant...you get paid first, why does the result matter. Private capital works hard on this to gain a return. They spend first, then are under pressure to make a return. In government funded research, it often is the opposite. You get paid first...then have to deliver something (even barely trying and ending in failure) and you can then get paid again the next time grant money is available.

Most research doesn't result in incremental progress as you pointed out, yet pharma companies still spend a TON of research. They live and breathe by getting to the next "big" drug to make them money and make up for all the failures.

Basically, while the Gates foundation isn't the example I was thinking of, the dangling of a big payoff from the government did spur a LOT of research for COVID (see vaccine and treatment methods for COVID). Private enterprises took some breakthrough concepts (mRNA vaccines) and did a ton of ground work to test and make them viable for humans.

I do strongly agree with your last point, public funded research should be directed at areas with no scalable return since private venture won't go into those areas (but having wealthy non-profits like the Gates foundation working on this is nice!)

> Private capital works hard on this to gain a return. They spend first, then are under pressure to make a return.

The key point here is "return" - in the private markets, it's just a numbers game. Most successful, important scientific research is not going to make a big return. Perhaps it'll lead to money for someone else down the line, but that's besides the point. Private markets are a bad fit for huge swathes of research where success != $$$. Which leaves a couple of areas, e.g. drug development...

> pharma companies still spend a TON of research. They live and breathe by getting to the next "big" drug to make them money and make up for all the failures.

While correct, it's important to remember that pharmaceutical company research spending is highly weighted towards drugs with a large number of patients or where demand is relatively insensitive to price. COVID vaccines are a perfect example because they fit both categories. This usually works out OK, but it isn't a good fit for a poorly-understood condition like long COVID where the size of the target market and the price sensitivity of the customers is very difficult to estimate. You also end up with other undesirable outcomes like the systematic underfunding of research into conditions that predominantly affect minoritized or less well-off communities. Pharmaceutical companies also rely on a huge body of publicly-funded basic research.

No, hang on, what is your evidence here? When we needed COVID vaccines, the research was done by private entities. That suggests that when the chips are down the private sector is better at research. And that funding was going in to companies that were already researching vaccines because it is obvious that whoever developed one would become rich. And the main contribution of the government was lowering the regulatory barrier to getting things approved quickly - the companies involved already had the technologies and processes ready to go, the vaccines were technically ready almost immediately. Why would treating long COVID be different? The main blocker is going to be that it is illegal to roll out treatments or that there will be substantial red tape.

It was notable how in the early days of COVID the ... was it the NIH? One of the TLA agencies ... centralised COVID testing under their banner, disrupted the private sector response and shipped out broken testing kits. The private market would have been all over the problem like flies on a grubby sheep. They're much faster at getting research done on health stuff, the financial incentives are absurd. People will pay literally anything for health.

Also a lot of the foundational research of modern society was done based on whatever rich people thought was interesting at the time. That is how a lot of the math was turned up. It is a perfectly fine strategy.

> Markets will instead allocate funding to the least-adventurous surest bets.

So the NIH is doing what, ignoring sure bets at curing long COVID? That shouldn't be encouraged.

Besides, you are wrong. Ever hear of something called the "Metaverse"? Companies regularly make big risky gambits that don't pay off.

> When we needed COVID vaccines, the research was done by private entities.

Decades of publicly funded research, then private companies are "spun out" of publicly funded research institutions and then the private companies are given yet more public money as grants.

The disgrace is that the profits are privatised when the novel research is not.

Solving COVID: Pfizer starts research in January 2020. Apparently they avoided Operation Warp Speed because they were worried about the government slowing them down [0]. We get a successful mRNA vaccine for I think the first time in history? Takes a few days, they've been preparing for this sort of scenario for years.

Estimated cost, $1 billion. The only thing slowing them down is legislation - they want to make money by resolving people's medical issues with novel techniques.

Solving Long COVID: NIH $1 billion. Nothing. Probably the biggest problem here is that groups like Pfizer are being banned from doing research by an NIH ethics committee that says trading 1 life to save 1,000 is an unacceptable trade.

Now I'm not against the NIH spending $1 billion on research. Better than feeding it into the military-industrial complex for example. But the evidence here is if you want a research team to fix a known problem, the people who know how work at Pfizer not the NIH. Now Pfizer probably can't do that trick of getting results on demand, but there'll be some company that can - assuming it is possible. There are a lot of companies so there are lots of attempts being made.

[0] https://en.wikipedia.org/wiki/Pfizer-BioNTech_COVID-19_vacci...

Biontech pioneered the mRNA technique and they were sponsored by German taxpayers; and Pfizer was promised by Operation Warpspeed that US taxpayers would purchase 100 million doses of any potential working vaccine before it was even developed, that must have felt motivating. There was no vaccines developed entirely through private funding even though the profits were entirely privatized, ie Moderna received about a billion in development aid and AstraZeneca somehow managed to pocket research out of Oxford University.

-- 1

https://en.wikipedia.org/wiki/BioNTech tells me BioNTech was founded in 2008 based on research by Uğur Şahin, Özlem Türeci, and Christoph Huber, with a seed investment of €150 million from MIG Capital and AT Impf.

I don't know much about Germany I must admit. Is AT Impf some sort of government body? Because this looks a lot like private actors spotting a good thing well in advance.

I'm sure they took government money at some point because the government is handing out money and why not. It'd be silly to turn it down. But there are obviously millions of dollars here to develop influenza vaccines and we see the payoff was billions of dollars. The Free market could do this with no intervention - the payoffs look pretty good.

> In September 2019, BioNTech received a capital contribution of US$55 million from the Bill & Melinda Gates Foundation, with the option of doubling that investment amount at a later date.

Heh, there they are.

-- 2

> ...US taxpayers would purchase 100 million doses...

Yeah but the 100 million doses purchase would have encouraged them to build infrastructure, which we already know the private sector is better at than the public sector at. Operation Warp speed wouldn't have hurt, but again they technically had the vaccine developed before Operation Warp Speed was a thing.

The only thing stopping people buying the vaccine in mid-2020 was that the government had made it illegal.

> A really spectacularly expensive whole lot of nothing.

Wait until you find out about the DOD.

At least the NIH salaries aren't going to warmongers & building weapons.

That sounds like useful research that future projects without the budget can use.

> if such a thing truly exists…

It exists.

Sounds like NIH got hijacked by a bunch of people who believed otherwise and required proof of pathobiology first.

I am always surprised by the amount of people on HN who just put out statements like "it exists" without any explanation, as if it informs anyone of anything else but the implicit "[I am convinced that] it exists".

Like, why? Can you share any more information? Some reasons on why you're convinced of that statement? Or do you consider yourself so important that you expect your opinions to be taken as real arguments, as facts, as something self-evident?

Maybe because it takes the bare minimum of effort to find information on it.

https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/...

A website written by a US government agency doesn't convince me that there's a disease out there which has exactly the same symptoms as being locked inside the house for months, and whose only method of detection is through those symptoms.

Maybe because everybody who has relatives over 50 knows somebody with Long Covid--probably multiple people.

What I don't believe is that this kind of syndrome is specific to Covid, I suspect it holds for every serious virus you get infected with. The only difference this time is that the medical community is watching.

The fact that Epstein-Barr is causative with MS and HPV is causative with cervical cancer shows that the damage that even fairly mild virii do persists for a very long time.

Any claim that a virus doesn't cause persistent damage simply means you haven't looked very hard.

I am 54 and have living parents, aunts, uncles and cousins which are significantly older. The majority of my friends are over 50. I don't know anyone with long COVID.

the only people I know with long anything are people who had chronic fatigue and long lyme disease but these two or three people are all wealthy neurotics

> Maybe because everybody who has relatives over 50 knows somebody with Long Covid--probably multiple people.

Of the dozens of people in my extended family that are 50+yo, few of whom were covid cautious, zero of them have reported symptoms resembling long covid. My parents are elderly as are all of the people they know. Zero of their friends have reported long covid, but they did know a couple of folks that died of it.

After nearly three years of arguing about it, I'm done with that. Spend your own time looking up answers, that isn't my job.

(Actually considering I've known about post-viral ME/CFS since sometime in the early-90s that makes it going on nearly 30 years of knowing about it. And I'm deeply uninterested in wasting my life debating about it with internet strangers.)

Considering your willingness to write out your opinions and "correct" people who are expressing skepticism, you obviously aren't done arguing about it, you're just done doing that in any non-obnoxious way.

Why comment at all?

> > if such a thing truly exists… > It exists.

My experience is heavily biased towards people at risk for long covid. I live in TX surrounded by people who weren't too serious about covid. I have friends that got covid 3-4 times. I know people with actual measurable lung damage that have long term consequences in that sense, but I know _zero_ people with anything resembling "long covid". No one I know knows anyone who has long covid. I believe it exists because a wide range of other viruses have occasional mysterious long term effects, but what I don't believe is that it's possible for it to be anywhere close to as common as it's purported to be(figures like 10-30% of those infected were thrown around by news outlets back when I was paying attention). My personal bet is that the majority of peoples' symptoms are psychogenic with a small minority experiencing physiological effects worth studying.

> My personal bet is that the majority of peoples' symptoms are psychogenic

You state that you don't know anyone who has long COVID one way or the other and then state that it must all be "psychogenic".

If it were that common to have fake long COVID you'd think you would know someone who was faking it.

Instead you have no experience with it and you're making sweeping pronouncements about it.

Yes, the studies finding 10-30% rates of long COVID were flawed, but they were usually of people who were hospitalized and they may have included the people you know who actually had lung damage.

And 3 million people can have long COVID and you might not know one of them since that is an incidence of 1-in-100 and even if someone you knew had it, it might not be so totally disabling that they couldn't keep up appearances and hide it from you.

This activism about this problem is ridiculous and is inside all of the long covid communities. I recently recovered from my second long haul and the people in those communities think they know better than world class clinical researchers tackling novel chronic illnesses.

They continue to think that money is being wasted from this "limited" pool on things like exercise/pacing and CBT trials which are known tools to help certain long haulers but especially "harmful" to ME/CFS where there is already limited research on controversial PACE trials. They believe that we should just be throwing all that money towards trials of unknown medications that haven't been tested instead. Many promising ones have already seen mixed results.

Also this tends to be a huge misunderstanding by armchair medical experts/"patient-led researchers" of what a DCC (data coordination center) is and how that would actually help with these trials long term.

Look, I get it. My last 2 years have been hell on earth. I've blogged countless times on this and I wanted immediate relief too. But the only things that helped me were the "controversial" things(paced exercise, CBT, etc) outlined here.

Could you please elaborate on what you did to recover?

Here's my first post:

https://jondouglas.dev/long-covid/

And my recent one:

https://www.reddit.com/r/LongHaulersRecovery/comments/12iv4p...

It is just strange to read this list as if it isn't a normal part of life.

Your first five-seven are just standard day to day living and if you lived that way, it seems to me you would never experience "long covid".

Note: Marathoning and other extreme excercise activities are not normal, regardless of how large the communties may be.

Before I got hit with long covid, I was in the best shape of my life, and was doing all of those things on that list. I was running 1.5 miles and exercising several days a week.

It absolutely didn't prevent me from experiencing long covid.

That is pretty much my story too. Experience is the most brutal of teachers.

One thing that is missing from his list is diet.

Not sure what you eat, but if you told me you were eating fresh fruits and fermented vegetables daily and avoided most processed foods, I would be shocked.

He mentioned "supplementation" and has a few things listed, none of which I would adhere, but general antiviral supplements (proven clinically, just search it) would certainly help you.

Quercetin+EGCG+ceylon daily This is a well regarded treatment regime for chronic viral infection

Or just garlic extract and ceylon extract if your budget is tight.

As someone with long covid (which is probably just nerve damage in my case, but i digress) I have been following long covid and been in the community from day 1 (sometime around april 2020 is when the first signs starting cropping up).

Anyway, a few notes bullet points:

- There are a few different types of LC. The array of symptoms is enormous, and people usually have a random(ish) spattering from a list of 100 things.

- People with LC usually have normal everything. Blood work, EKG, spirometery, sleep study, whatever. Everything comes back fine.

- The overlap between anxiety symptoms and LC symptoms can be pretty high, to the point where the venn diagram becomes just a circle. It's definitely not anxiety, but at least one hypothesis is that your body kind of gets stuck in anxiety mode, even though mentally you aren't anxious.

- There are a lot of mentally unwell people in the LC crowd. Obviously having a terrible chronic condition like this and people not believing you will do you in. But their is a subset of people who do not have LC, but have convinced themselves that they do have it, and will not listen to anyone, especially doctors.

- There is tons of distrust in the medical community. People really despise the whole system, and it leads to a lot of venomous encounters where people go to doctors just to yell at them. This isn't as fair as it may seem, since at the end of the day, people are upset doctors aren't curing them, but the truth is that there is no cure. The doctors who normally see patients aren't research doctors. They go by the book.

All this makes for a pretty bad experience on the medical side. People who by all objective metrics are fine, but have basically dropped out of life from an invisible chronic illness, who are angry and a bit unhinged, and the medical books have zero information except "psychological".

- People with LC usually have normal everything. Blood work, EKG, spirometery, sleep study, whatever. Everything comes back fine.

Not everything.[1][2][3] Brain damage is showing up in MRI scans.

[1] https://www.nature.com/articles/s41579-022-00846-2

[2] https://neurosciencenews.com/post-covid-brain-21904/

[3] https://nnn.ng/study-finds-altered-brain-function-in-long-co...

Indeed, after long covid my wife showed heart damage too, though later scans showed noticeable improvements from her worst results.

I was just about to post that nature.com link. So much is known by researchers that isn't well known in the general public.

My SO ended up with optic nerve damage. Speaking with the neurologist, they've seen a huge uptick in cases with optic nerve damage in both eyes for older patients which is unheard of previously. When the neurologist spoke with others in the same field at a conference, the same is seen all over the world.

I asked if there have been any studies to these findings, and she said no because there's no way to pinpoint covid as the root cause since most everyone has had it.

Since covid was said to injure epithelial cells, I'm reading about glycocalix these days, a glycan layer on the edothelial apical surface (facing blood vessel inner space). When it's wiped it causes absorption problems, vascular issues.. could explain chronic fatigue.

> The overlap between anxiety symptoms and LC symptoms can be pretty high, to the point where the venn diagram becomes just a circle. It's definitely not anxiety, but at least one hypothesis is that your body kind of gets stuck in anxiety mode, even though mentally you aren't anxious.

Whoa, I have joked about LC myself a few times, because I am exhausted all the time but cannot sleep because I'm constantly thinking and "buzzing". I just the other day was thinking, "boy, this sure feels like I've been having a low-grade anxiety attack for like months or years now..." but I passed it off as a stupid thought. Now I am not so sure that I'm not having a low-grade, constant anxiety attack. I have had to medicate (doctor supervised) almost continuously to reduce the effects of the anxiety I feel, and I feel like it's not going away. I have gone through quite a bit of mental health stuff over the past 2 decades, so even being semi-knowledgeable about myself and what anxiety is, I guess I just overlooked these effects for a while. I was doing so great on the mental health front until this pandemic hit! Do you have any groups you follow that I could go read through that might give me some ideas on how to better combat these effects, assuming they're somehow anxiety related?

I'm not on Facebook, but from talking with friends who have related conditions, that's where everyone is online. You have to be aware that some of these groups promote quackery and others are reasonable. (There are always good intentioned people who don't know whether something is or could be quackery because everyone can't know everything. But the responses will usually tell you whether the group is trustworthy or not.)

interesting. an elderly person got both anxiety symptoms and crippling fatigue a month after covid. she seems to get better with anti-anxiety medications (has no mental issues). we literally scanned everything including brain, blood, abdominals, lungs, neurologic symptoms, everything. It's down to either post-covid fatigue, anxiety or both

So long COVID can have almost any symptoms, is not testable, and has a strong association with anxiety. Do you think it's possible that this is just another Havana syndrome or gulf war syndrome?

I believe long covid could be a PTSD type of thing (shell shock, combat fatigue, etc).

I've recovered from two long hauls after two infections and as I reflect back, both of those infections were times of great stress (having a new baby, stock market tanking, layoffs, family deaths, etc).

The things that have helped me are the controversial ones outlined here. Exercise, CBT, lifestyle changes, and even some alternative ones (nicotine, cold plunges, deep breathing, etc).

I'm simplifying in my statement, but generally the way it works is that basic tests give evidence for more involved tests, and those tests evidence for even more involved ones. If all the basics look good, doctors generally don't want to start shooting in the dark with much pricier and time consuming tests.

So for example if you have cardiac muscle damage, but it only shows up on a cardiac MRI, it can be very hard to get one when your EKG is normal, and they even went so far as to do an echo, and that came back normal too.

There are tons of examples of this in long covid. High end expensive tests may show something, but there is no path there because the book says you need to be showing xyz common with known illness abc before that test is warranted.

"There are a lot of mentally unwell people in the LC crowd"

Yep. And they ruin it for everyone to the point that the image now exists that LC is "just an excuse for white middle-aged women to not have to work".

Part of a larger problem of obsessive self-diagnosis of mental illness and to wear any imagined outcomes with great pride, as if its some badge or privilege.

While those people certainly exist, what I've seen is a lot of people who are treated like less-than-human because they have minor differences from the general population. You can even see replies here stating opinions that people with long covid are crazy, or that it's a "them" problem and nobody else should have to lift a finger or change any aspect of their lives for them. They get told that if they're high risk they should just stay inside for the rest of their lives and not interact with the rest of humanity.

Meanwhile, when they do go out, they have nut jobs who say the above things to their faces, or in extreme cases try to do things like rip their masks off their faces because someone on TV said that would be a good idea.

Point being that they're already marginalized and if they don't publicly display it, they get more marginalized. So yeah, they wear it as a badge (sometimes even literally!) because the general population needs to start seeing them and dealing with them and not just shoving them into a corner and telling them to be quiet and expect to have reasonable accommodations made for them. Even simple things like having a sidewalk that fits a wheelchair is apparently an affront to some people.

>You can even see replies here stating opinions that people with long covid are crazy, or that it's a "them" problem and nobody else should have to lift a finger or change any aspect of their lives for them

To be fair, it is a them problem, as in it is literally their problem.

I totally agree that nobody should be treated with hostility, but that doesn't change matters. Why exactly should someone else have to lift a finger or change their lives? They can ask for accommodations, and people can choose to give them. They should not get to unilaterally force and expect compliance.

People have problems, but they're not necessarily other people's problems

Mini, if not most, people will willingly help others within reason. The second that people in need start demanding help and that others must do as they say, most people will classify them as enemies

Factually, it is a "them" problem. In most countries, all restrictions are lifted and COVID is now considered endemic. The public has fully embraced the return to an open society and importantly, across the entire political spectrum.

If you're vulnerable to COVID, it is up to you to protect yourself. As you do that, you should absolutely not be ridiculed for it.

The opposite case though, scolding the public because they don't restrict society just for your sake, is unrealistic. An example:

https://front-end.social/@jensimmons/110223694915884103

In this rant (read it in full), this person blames conference organizers, attendees (including close friends and coworkers) for not masking and even implies a link with fascism. If you do not forever mask in every in-door space, you're a murderer.

If you believe 99.999% of the world is evil and should adjust to you, you have some thinking to do.

> the few trials it is planning have already drawn a firestorm of criticism, especially one intervention that experts and advocates say may actually make some patients’ long Covid symptoms worse.

> Instead, the NIH spent the majority of its money on broader, observational research that won’t directly bring relief to patients.

Doesn't one kind of follow from the other? If the interventional studies all get hit with a "firestorm of criticism", then all you're going to be left with are the observational studies.

You'd need observational studies to make intelligent proposals on interventions.

There's probably not a lot of appetite to be part of an intervention study if the observational results have not been published.

There probably is an appetite if someone had a promising treatment. I searched to see if the UK has any interventional studies but all I found was one that seemed to be about helping people to tailor their self-management.

https://www.birmingham.ac.uk/research/quest/21st-century-hea...

"Using their findings, the researchers will co-produce with patients a targeted intervention for Long COVID, tailored to individual patient need. Delivered remotely in the community, via the Atom5™ app, it will provide critical support and information to empower patients in self-managing Long COVID."

A promising treatment for what?

IF you dont know what long covid looks like and how it acts, you can never claim to treat it.

Did you miss a few steps in this thread?

I dont think so?

You need observation studies to characterize a condition before you can claim to have any impact treating it.

The artlce you shared makes great effort to spell this out.

This is pretty standard? A division I worked for years ago received $20 million per year from the DoD for a “pilot” that never even launched. We got paid for 5 years before the plug was pulled. The government is an endless fountain of cash.

Studying long COVID too much interferes with the narrative that the problem is over.

Each round of COVID does some organ damage, and that's cumulative.[1][2] Immunity after infection or vaccination is temporary; it lasts 3-18 months. Getting COVID more than once is quite possible.[3] Mostly in people with other previous damage at this point. We don't have enough years on this yet to see the long-term pattern.

[1] https://www.harvardmagazine.com/2022/12/covid-reinfection

[2] https://medicine.wustl.edu/news/repeat-covid-19-infections-i...

[3] https://www.medrxiv.org/content/10.1101/2021.06.10.21256915v...

What about other regular illnesses, don't they also leave some sort of impact on your body at the end of the day?

Occam's razor would suggest that COVID is just like other illnesses, for the most part, except for being an outlier in some areas (virality, severe symptoms).

I think you're thinking of the null hypothesis. Occam's razor would prescribe determining the number of assumptions made by each explanation and preferring the one with fewer. You're introducing a new assumption here, and I don't see how it helps us better understand the evidence. "COVID is more severe than typical viral infections, and so leads to unusual outcomes" is a pretty simple explanation, well supported by the observations you yourself made that it is more contagious and has more severe symptoms than many others.

I think you are both saying the same or compatible ideas.

Well I mean that in the realm of more severe infections, it's probably average and not some super mutant alien illness. In that sense I apply Occam's razor: it's probably bad to a similar degree as other bad diseases of the same type, it's probably not a radical unprecedented thing from an alternate dimension (assuming no lab leak hypothesis).

And from my non expert historical perspective, it sure seems to fit that profile.

This is my understanding of the issue as well--that viruses in general can have wide ranging affects depending on the person, and the symptoms of LC are not unique.

So what's notable might not be that Long Covid is a thing, but that due to how prevalent it was, a massive amount of people were subject to the ~0.1% (or whatever probability) tail risk that a given viral load would very negatively impact their body (nerve damage, heart damage, etc), much like any other virus would.

Even if it is from a lab, it is still a virus and not some radical new physics or biology. We know that viruses harm people and have long-lasting consequences.

The short answer is yes. Other viral infections can leave long lasting damage and a wide array of symtoms ranging from psycological to diabetes. This is well documented.

Occams razor would expect to see some of the same results with COVID.

I can't read shit like this because it reinforces an anxiety I have: that we may all die of some kind of COVID induced thing _some day_. That COVID has effectively poisoned the world with a virus that eventually wears you down after having it repeatedly and can't be stopped, with a large impact on the global lifespan and disability rate.

Any kind of evidence against this would be much appreciated.

You're jumping to doom and gloom conclusions based off internet posts by people who aren't experts in the field.

Your not going to build a house after watching some YouTube videos, why are you entertaining ideas from the same kind medical knowledge.

This is what misinformation is, maybe it's not intentional, but if you don't understand fundamentals you can't just piece together random bits of information

Your first links cite Veterans Affairs studies. VA patients differ in many ways from other populations and in particular skew OLD. Median age of all Americans is 38.1yo. "The median age of veterans in 2018 was 65".

What immediately jumped out at me from the third link was:

"Median age was 64.5 years, 40% were Black, and 39% were female. 83% smoked within the prior year, 61% were overweight/obese, 83% had immune compromising conditions, and 96% had ≥2 comorbidities."

Observational studies of specific elderly and otherwise at risk populations are unlikely to generalize well to the rest of us.

There's also the issue of separating correlation/causation. Maybe frail people at high risk in general for complications are more likely to be infected multiple times rather than it running the other way.

Your highly pessimistic perspective is at odds with what most of the rest us are observing and this quick glance at your sources gives me some suspicions why.

I won’t say enough to identify myself, but the company I work for is working hand-in-hand with researchers as a part of this funding. I can’t speak for the entire sum of money, but some of it is definitely being put to good use and is making an impact via the research being conducted.

Please, don't let the flamebait get to you, I'm sure most of the folks are doing good work. It's sickening how twisted society has become over this.

On this topic, an interesting paper about possible causes and treatments of long COVID has been published recently. Summary by an author: https://mastodon.nl/@vickyvdtogt/110196805189572082

This seems really promising but a little too good to be true. Hope she's right.

Anecdotally, my latest COVID (acute only, I didn’t get the director’s cut) manifested itself as two days’ worth of strong pain in what seemed to be my legs’ muscle tissue, which I believe is connected to high lactate (why limbs hurt after heavy exercise).

This symptom never accompanied a flu IIRC, though I recall it happening in the past after alcohol intake.

I wonder how related to "long lyme disease" this is. I listened to a podcast, Patient Zero, about how a very small percentage of people who get lyme disease have symptoms for years.

The graph labels 767M for "clinical research studies" and then says many studies haven't started or are in early stages, but...

does that mean the money is already spent and those studies will require other money?

or that the money is allocated to the only formally announced study but hasn't been spent yet?

or that the money is allocated to 5 mostly-yet-unknown ones?

The latter seems like the best case but one wonders why these 5 observational studies would need that much, and if there's any mechanism for pulling some of that funding back?

EDIT: there's a bit "The agency said $811 million has been legally committed to various activities, and the rest is earmarked to support future research activities." so it seems like the last part, so: hideous mismanagement to promise to spend that money in fixed ways regardless of results...

A billion here and a billion there. Before long you are talking about real money. Rarely are government budgets based in reality.

Someone talks Congress into giving them X dollars to solve problem Y because many people think Y is a problem and want it solved. Instead they spend 3X dollars and only a tiny portion of it goes towards solving Y while the bulk of it goes into Z instead. Sometimes Z was the point all along and they were purposely deceiving us. Sometimes Z takes over because the people running the program decide that Z just became more important (to them at least).

Have they at least decided what long COVID is? That basic question already is so politicized it’s difficult the research.

I feel like I'm in this group, and although the jury is still out, my personal anecdata makes me think it's one of two things.

(1) The virus is possibly hiding in the body creating these little reservoirs that allow it to persist.

(2) Some people are likely just more susceptible to damage caused by the inflammation or whatever in the system and just take longer to recover.

I have a feeling that it's likely a combination of both of these.

Are you up to date on your boosters?

They've found a great deal about what long Covid is. See: https://www.nature.com/articles/s41579-022-00846-2

(Especially the "Major Findings" section)

In the heading of this article Long COVID is the ‘often debilitating disease’. But then later on you have it if you have a slight headache for 2 months.

So it's not always debilitating. But it can be this way and still be often debilitating.

The author of this article is selling outrage and we are all buying. They are getting views and benefiting from this anti-government outrage. The author repeatedly appealed to long-covid patient authority like their medical opinion has any weight at all.

This fear = views = status = profit conflict of interest is the problem in current America and why it feels like no one can understand anything and trust in our institutions is at a low.

  “The NIH RECOVER study is pointless,” said Jenn Cole, a 
  long Covid patient based in Brooklyn, N.Y., who wanted to 
  enroll in the study but found the process inaccessible. 
  The research is “a waste of time and resources,” she said, 
  and fails to use patients’ tax dollars for their benefit.

  “We didn’t need to recreate” existing studies that already 
  answered these questions, said Cole, the long Covid patient.

This isn't journalism. This is garbage. This article produces anger, not understanding.

There was a great deal more to the article than you're suggesting, and I didn't read it as 'anti government outrage.' You can support government interventions and still think the NIH is doing a mediocre job on this project. There's a lot of comparative and contextual information in the article that you seem to have ignored.

We spend 4 billion a year on Alzheimers, and what do we have to show for it? We spent at least 500 billion on AIDS and we have PrEP after 40 years of research.

The author's core assertion is that 1 billion should buy a potential treatment. The entire article is centered around this core premise. That is a flawed idea at it's core and shows that the author is writing on a subject beyond their pay grade. Worse, it's reinforcing emotions that other people who are not experts under the guise of being well researched. This article increases net ignorance.

> Instead, the NIH spent the majority of its money on broader, observational research that won’t directly bring relief to patients.

"Instead of spending money to solve the problem, they are first trying to understand the problem."

Is that not absolutely absurd to you? Am I insane for reading the author's statement that way? Does the rest of the article really not follow the same conceit?

The author makes the assertion that if there is no treatment there there is nothing to show. I would argue that to prove "nothing to show" you would have to argue that understanding of long COVID has not been increased. I do not think the article addressed what 1 billion got us, only what 1 billion did not get us.

No, that's a misrepresentation of the content. I'm not going to get into a silly cherry picking argument, you can read my sibling comment for where I've commented on the substance of the article.

OK, the headline and the first few graphs are a bit angering…which, mind you, they spent a billion dollars with nothing to show for it…but then the rest of the piece goes into in-depth discussions on what went wrong.

It’s pointing out the lack of an org chart for figuring out who is responsible for what. It’s pointing out their observational study basically doesn’t include a control arm. It arguably does lean a little heavy on long COVID patient advocacy…but given they spent that much money and produced nothing, at all, apparently not even a patient registry…that’s bad! That’s not misplaced anger at our institutions—when you can't even come up with an org chart, that’s objectively bad!

The government extracted money from the broad populace and delivered it to PMC bureaucrats. Everything looks normal here

What is "PMC"? I am only aware of that three-letter-acronym (TLA) being used for "private military contractors", and didn't see any definition of it in the parent comment.

On a broader level, could we all just define our acronyms the first time we use them in a thread? Acronyms save very little time, and add a lot of confusion.

edit: I thought about this more, and am now guessing you mean 'private management consultants"; is this correct?

Professional-managerial class. Originally it was a term in Marxist and paleoconservative analysis to refer to an emerging class of workers who do not own the means of production (and hence are not "capital" per se) but have ended up de facto doing all the management of capital because of the distributed power and ownership structures endemic to modern society (and so are not quite the proletariat either). Colloquially (as the parent is using it) it is used derisively to refer to busybody white-collar workers who produce nothing of value and seem to exist only to further bureaucratic obstruction.

"professional managerial class" which is basically interchangeable with "petite bourgeois" in a lot of contexts.

Professional managerial class. Generally used derisively to refer to people with high paid jobs who serve the interests of the wealthy.

Seems like a lazy way of saying, “anyone I identify as serving someone or some cause I don’t like.”

I thought it meant PubMed Central which would be fitting here

those fatcats in PubMed with their hog legs on the neck of the proletariat!

When congress took out all those PPA loans and then forgave them, they used the new money to pay the PMC to further their interests.

Looks like the NIH is a similar story of corruption.

I am shocked they only wasted a Billion...

That is 0.0001% of all the wasted money in COVID spending....

"Eschew flamebait. Avoid generic tangents."

https://news.ycombinator.com/newsguidelines.html

Long Covid is mostly a mental disorder. Just like ME/CFS.

And? So what if it is? That makes it not real in some way, or not worth consideration or study? It's affecting a lot of people, their suffering is real. The cause is significant to understanding and relieving the effects. If we determine 100% that it's mental we still don't get to shrug and say alright then that's that good luck everybody.

Obviously, this "disease" joins all the other psychosomatic ones. So nothing new.

And to think some people thought $100m into GPT3 training was a waste..

Doesn't this mean long COVID isn't a thing they could test for reliably given the low rates and the inability to give people COVID for the test? Observational studies on people already showing symptoms is about the best they could have done.

Some people, when confronted with a problem, think "I know, I'll use the federal government." Now they have two problems.

Of course, this attitude is one of the biggest reasons inefficiency goes unchecked. If the opposition option is simply to bang a drum of "do nothing at all and wash your hands of problems" then all the inefficient agency has to do to maintain the status quo is "look like a less bad option than doing nothing at all."

The drug companies that produced the vaccines were real hero’s of the pandemic. I’m sure they benefitted from various forms of government support … perhaps we should focus government resources where it’s been impactful, such as to research grants like those that led to these results.

What do you think this was supposed to be?

> I’m sure they benefitted from various forms of government support

…like paying for all the vaccines ahead of time, without any guarantee they worked, and the decades of government-sponsored research that made them possible in the first place? The drug companies were not in anyway “heroes,” but net beneficiaries of the enclosure of public research, which, combined with decades of bribing politicians to prevent state manufacturing capacity and enforce bogus IP restrictions, has resulted in wildly inequitable global vaccine access and countless, unnecessary deaths across the world.

This is like saying LeBron James' mom is the real basketball star. She carried him in her womb and fed an clothed him throughout his childhood.

This is a hilarious analogy because #1, I’m sure LeBron would say this publicly while drug companies pay millions of dollars to PR firms to lie about how much they profit from public research, #2 LeBron’s mom didn’t invent the techniques that made him a star player, while the publicly-funded research did this for MRNA vaccines:

https://www.cbc.ca/radio/quirks/jun-12-missions-to-venus-lea...

> I’m sure they benefitted from various forms of government support

The whole world can thank the Trump administration and Operation Warp Speed [0].

It provided billions of dollars and firm orders for any manufacturer who could get it's vaccine candidate on the market. All paid for by the American tax payer, of course. To fight a disease that most likely originated in a Chinese lab.

Without it it would have been months of additional delay for R&D and production (see the vaccines not selected for Warp Speed or the CanSino program in Canada[1])

[0] https://en.wikipedia.org/wiki/Operation_Warp_Speed

[1] https://www.cbc.ca/news/canada/cansino-deal-canada-nrc-fifth...

Obviously I’m not advocating for doing nothing. I’m saying the feds are gonna fuck up anything they possibly can, so maybe somebody else should be handling this.

Maybe my comment is pointless because I'm not US american, but have you thought of, uh, fixing your feds? I mean, instead of either creating from scratch some ideal system or passing the hot potato to some privates which possibly have opposite interests?

If we start making incremental changes, there’s a chance our magic imaginary solutions might actually be implemented and get dirtied by the real world.

If you aren't advocating for doing nothing, but many parts of the federal government exist because nobody actually "handled things" in the "maybe someone else should be doing something" days prior to that part of the government getting created... then how do you actually propose making sure that "maybe someone should do something" gets turned into action?

I think you all know that I've always felt the nine most terrifying words in the English language are: I'm from the Government, and I'm here to help. A great many of the current problems on the [thing] were caused by government-imposed embargoes and inflation, not to mention government's long history of conflicting and haphazard policies. Our ultimate goal, of course, is economic independence for [thing], and through steps like the tax reform bill, we seek to return [thing]ing to real [thing]ers. But until we make that transition, the Government must act compassionately and responsibly. In order to see [thing]ers through these tough times, our administration has committed record amounts of assistance, spending more in this year alone than any previous administration spent during its entire tenure. No area of the budget, including defense, has grown as fast as our support for [thing].

- President Ronald Reagan[1], 1986

Sometimes it is appropriate to invest vast sums of public funds into unproven technologies and ideas. The pandemic seems to be a textbook example of where we can reasonably expect our federal government to act swiftly and decisively, for the greater good.

That does not mean we should simply shrug our shoulders when, in hindsight, it becomes obvious a lot of misfeasance occurred during this unprecedented time. Billions of dollars were thrown around everywhere with very little oversight. It may be decades before we fully understand where all the money went, and most would likely be shocked to discover pandemic-fighting funds were used to prop up pet projects and ideological programs instead. Funds pitched to the public as destined to fight the pandemic were instead used for anything but - and collectively, red or blue, we are all suffering the consequences of those poor, often obfuscated decisions.

We should scrutinize the relationships these farma companies had with the federal government before, during and after the pandemic. They mostly received a blank check for the government to "solve" the pandemic, and it's debatable if that is what really unfolded.

[1] https://www.reaganlibrary.gov/archives/speech/presidents-new...

> It may be decades before we fully understand where all the money went, and most would likely be shocked to discover pandemic-fighting funds were used to prop up pet projects and ideological programs instead.

I, for one would, not be shocked.

On the other hand, I would be shocked if we grew a collective spine and did something about it.

"Eschew flamebait. Avoid generic tangents."

https://news.ycombinator.com/newsguidelines.html

Was that flame bait? I thought it was common knowledge.

Yes, it's generic ideological flamewar stuff. You can't have a substantive discussion where the only information is boo-vs.-yay about some politically divisive topic. It'll just lead to generic ideological battle, where people just repeat talking points at each other.

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