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Comment by perardi | Hacker News Reader

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.

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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.

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> ...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.

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.

> 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.

> 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.

Sounds like they are a consulting group.

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

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