> 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.
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.
"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."
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.
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.
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.
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.
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.
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.
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?
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.
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.
"The average takes 18 months" does not mean that "a new one should take 18 months" even if the only thing determining that duration was purely random which isn't the case with something like pandemics through history (where things like travel and lifestyle, etc, play big roles as well as just the unique nature of different diseases).
the average takes 18 months does absolutely mean you look deeper if you come out above average on the coattails of unprecedented new medical and epidemiological technologies and practices
I mean, we're in a thread discussing a bunch of money allocated to look deeper into one aspect, and there have been continual studies throughout the pandemic, so I'm not sure who opposes the point of looking deeper.
But I think that you're actually claiming you know the answer: "How much did we spend on covid with a 30 month achievement to show for it?"
You seem pretty certain with that phrasing that the actions taken were either ineffective at best or counterproductive at worst. Without any broader discussion other than "here is a stat on past pandemics" and "here is a stat on current spending." That's not looking deeper.
You complain about a different commenter pointing that there have been much worse ones as well. But you aren't actually doing much different other than saying "sometimes they don't last as long, what did we do wrong???" There's been a lot of discussion and study of transmission rate vs fatality rate vs incubation period etc that covers how this particular disease is different than many of the ones in that "average", and how that should change your expectations, go look it up. This is directly relevant to your "we actually were told that what was recommended was expected to shorten this black swan pandemic" thing - the data that early recommendations on was preliminary, and as more results came in, policies changed. March 2020 was different than September 2020 was different than March 2021 was different than October 2021 was different than post-spring-2022...
Cause otherwise your "it could've been better" is backed up with not much more than anyone else's "it could've been worse."
This isn't particularly true, and to the extent it is true it's misleading.
A decent example from before we tried viable mitigations is the Black Death. The main pandemic lasted around 6 years.
Many more recent pandemics have been shorter, but we've actively tried to solve all of them. A pandemic lasting 18 months with active interventions does not mean that if we do nothing the next one won't be longer.
Edit: Also pandemics are relatively rare and distinct. So they're a classic example of a bad thing to average.
> pandemics are relatively rare and distinct. So they're a classic example of a bad thing to average...
so you pick the worst one for your example?
this is exactly what averaging is for, but averages need to be interpreted with standard deviation, and sure, there may be better statistics to use too, like if we're going to use worst-case, then we should see a rank ordered list
statistics are useful because they tell a story, but they can't tell the full story. Believing the science has always meant "by being skeptical" and it's irritating that so many in the mainstream don't want the narrative to be poked at
Looking at the worst in history establishes that we have experienced much worse, and that expecting a black-swan event to last no longer than average is unsupported.
sorry, but taking the mean does not have a sample size, it's the entire population, it has all the significance that exists. Stop trying to tell me about statistics.
"it has all the significance that exists" in this case is a weird way of saying "there simply isn't much significance in this are", but OK!
You brought up the Spanish flu which is a GREAT example of how you're blatantly abusing stats in another way too!
You're fixated on one stat: length.
The Spanish flu killed 1 in 150 Americans. Covid killed about 1.1M so far, which is 1 in 300. So if we are choosing to treat those as comparables, what happened? We traded a year of duration - and most of 2022 was pretty damn back-to-normal compared to 2020 and 2021 in a de facto sense even if we "officially" called it a pandemic still - for 1.1 million deaths instead of 2.2 million deaths. That seems pretty good, no?
Note also that there's no rigorous argument COVID lasted three years. Biden's plan to end the COVID emergency in about a month is a political decision.
Right now a significant number of people are dying from COVID and there's no restrictions on everyday life. I expect the same to be true in two months when the state of emergency is lifted.
So either COVID ended a while back or it won't end for a while. I happen to believe the latter, but regardless I don't see a case for 3 years.
Note also that I wasn't building any argument around "3" years so your argument undermines nothing.
Note also that your belief that it will be longer than 3 years is you arguing for a greater disparity to point out.
Why are you arguing this way? Next you're going to note that I use the spelling gray instead of grey to describe the matter that seems to be lacking here.
what is your stake in this? why can't you tolerate questioning of science? Questioning science is at the heart of science.
"whole population has all the significance that exists" was an entirely correct and appropriate rejoinder to the extremely flawed argument that had been made which you seem to still be defending.
I don't think you are arguing honestly at all. No matter what stat I were to mention, you'd start screaming "you're fixated on one stat", then you ignore all the myriad medical treatment options available 100 years ago to now as if that wouldn't obscure the point your trying to make. Again, it's dishonest, you're dishonest.
If you go back to my first post I raise interesting an important questions. What are you so scared of? You must have some stake in the outcome, some stake that cannot bear normal scientific inquiry.
1) Proof by counterexample that not all pandemics end quickly
2) When we actively intervene many pandemics end quickly. This doesn't prove the intervention was necessary, but it obviously doesn't prove the intervention was unnecessary either.
In analogy form: "Most people are paid a salary. This shows working is unnecessary. I'll quit my job and keep getting paid an average salary".
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.
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.
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...
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.
> 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 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:
> 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])
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.
> 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.
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.
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.
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.
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".
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.
The same people who cried about this are usually the ones who tell you to “learn to code,” “just move,” and to “pull yourself up by your bootstraps.” I have a hard time having sympathy for people who are misinformed and make sad choices as a result.
Authoritarianism is ok as long as it's only detrimental to people I don't like. Being vaccinated was a sad choice for many. These are real people whose lives have been ruined by an industry who's most important mantra is "do no harm".
But it raises the philosophical question: what’s one life compared millions saved? That’s easy to say when you aren’t the one with (alleged) vaccine induced ALS.
Not a single life was saved from the vaccines, even though deaths from COVID were almost exclusively amongst the unvaccinated once a majority of the population received their shots? That’s an interesting take.
This seems highly unlikely to be true, that account is not describing symptoms of ALS, and no doctor has diagnosed him with it.
It's more likely inflammatory induced muscle spasms, which could happen due to abuse of drugs such as ivermectin–if I were treating him (Army Medic, ~EMT-P equiv, not a doc), I'd recommend he stop taking it. A few months without ivermectin and maybe a muscle relaxer should do it.
After perusing his timeline some more, I get the feeling that doctors have told him this already and he's ignoring their advice in an antivax crusade that unfortunately media has perpetuated. He keeps asking for doctors to give him the Dx he wants, not the one he actually has. These lies are hurting real folks, and he is a prime example of it :/
This was unambiguously the right thing to do, if you refused to vaccinate you should not have been in public spaces at the height of the pandemic, period.
The reality is the vaccines do reduce transmission, just not as much as hoped. They are very effective at preventing infection, though that immunity wanes over time (just as immunity from infection does), but it does continue to help prevent serious illness from occurring.
The vaccines were shown to reduce infection rates, which will reduce transmission. This was known in the trials used to gain emergency use, though reduction of transmission specifically was not part of the studies, it was understood that because infection rates were reduced they would reduce transmission. The subsequent results confirm that.
That said, it sounds like you are conceding the point that the vaccines reduce transmission and are effective at preventing illness, which is good, and contradicts your earlier statements:
> there was never evidence these vaccinations prevented infection/transmission.
> The evidence is that they suppressed symptoms, which people misunderstood as preventing infection/transmission
> This was known in the trials used to gain emergency use, though reduction of transmission specifically was not part of the studies, it was understood that because infection rates were reduced they would reduce transmission.
Pfizer's press release very specifically did not say that. They correctly distinguished between SARS-CoV-2 (the virus) and COVID-19 (the disease caused by the virus), only claiming a reduction with the second and making no claims about the first. They avoided making any claims there because they did not test for the virus until after symptoms developed, making it impossible to make any claims about infection/transmission.
It was well-known for a month or two after the announcement, after which it got memory-holed hard:
> That said, it sounds like you are conceding the point that the vaccines reduce transmission and are effective at preventing illness, which is good, and contradicts your earlier statements:
I stand by what I said. Note the timeline and that I used "was". The whole argument was about 2021 and early 2022, then you argued otherwise using evidence we only had in late 2022 and 2023.
From your earlier comment:
> because there was never evidence these vaccinations prevented infection/transmission
You are refusing to admit you were factually incorrect, it's very disappointing.
Everyone knew that the trials did not specifically study transmission rates, I never disagreed with that. The fact is, as soon as the vaccinations went live we had massive data supporting it, and studies were done that completed in the next years that confirmed it. Societally, we knew the vaccines were effective at both preventing transmission (though not as effective as we'd like) and preventing infection (though for not as long as we'd like).
I'm done engaging because you refuse to admit you were wrong regarding the efficacy of the vaccine and are now changing your argument to be about a specific timeline, which is asinine - the studies to confirm what we were seeing in realtime with the vaccine rollout would _of course_ take longer than the trials that started the rollout.
I consider it forced when people are threatened with loss of job or livelihood while also having a family to sustain. You may disagree. And technically, you'd be right.
"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:
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.
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.
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.
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.
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).
2. The flu is a known, covid was a near complete unknown. It's easy in hindsight to say that we shouldn't have locked down, but if the thing had mutated and wiped out half the planet, you'd be singing a different tune.
The lockdowns weren't there to stop you spending a day in bed. They were broadly to protect those who had the highest risk of getting seriously ill from covid.
And actually, they didn't really care about those people, it was just that if those people were blocking up hospital beds, 'the rest of us' were going to start dying from the normal totally treatable things that happen to us. It was really about limiting the wider impacts, not helping someone in their 80s live a other 5 years (though I totally believe someone in their 80s or at any increased risk deserves that respect and support from the rest of society, and deserves people making small adjustments to protect them)
Indeed, for the vast majority of individuals, the cost of lockdowns exceeded the expected benefit.
The idea that they helped or would help the average person is/was missinformation.
It was always about preventing significant downsides to minority of people who would see a positive average benefit from lockdowns (the sickly, elderly, immunicompramised, and those likely to need medical treatment during the pandemic.)
This isn't neccessarily a bad thing in general.
However, there were several areas where the harms of lockdown policies were ingnorantlly imposed without having much benefit at all, or with insufficient consideration for the harms caused.
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.
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.
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.
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.
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.
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.
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!
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.
187 comments
[ 3.3 ms ] story [ 218 ms ] thread> 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.
There's probably not a lot of appetite to be part of an intervention study if the observational results have not been published.
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."
IF you dont know what long covid looks like and how it acts, you can never claim to treat it.
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.
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.
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.
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.
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.
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!)
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.
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.
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.
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...
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.
Wait until you find out about the DOD.
At least the NIH salaries aren't going to warmongers & building weapons.
It exists.
Sounds like NIH got hijacked by a bunch of people who believed otherwise and required proof of pathobiology first.
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?
https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/...
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.
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.
(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.)
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.
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.
But I think that you're actually claiming you know the answer: "How much did we spend on covid with a 30 month achievement to show for it?"
You seem pretty certain with that phrasing that the actions taken were either ineffective at best or counterproductive at worst. Without any broader discussion other than "here is a stat on past pandemics" and "here is a stat on current spending." That's not looking deeper.
You complain about a different commenter pointing that there have been much worse ones as well. But you aren't actually doing much different other than saying "sometimes they don't last as long, what did we do wrong???" There's been a lot of discussion and study of transmission rate vs fatality rate vs incubation period etc that covers how this particular disease is different than many of the ones in that "average", and how that should change your expectations, go look it up. This is directly relevant to your "we actually were told that what was recommended was expected to shorten this black swan pandemic" thing - the data that early recommendations on was preliminary, and as more results came in, policies changed. March 2020 was different than September 2020 was different than March 2021 was different than October 2021 was different than post-spring-2022...
Cause otherwise your "it could've been better" is backed up with not much more than anyone else's "it could've been worse."
A decent example from before we tried viable mitigations is the Black Death. The main pandemic lasted around 6 years.
Many more recent pandemics have been shorter, but we've actively tried to solve all of them. A pandemic lasting 18 months with active interventions does not mean that if we do nothing the next one won't be longer.
Edit: Also pandemics are relatively rare and distinct. So they're a classic example of a bad thing to average.
so you pick the worst one for your example?
this is exactly what averaging is for, but averages need to be interpreted with standard deviation, and sure, there may be better statistics to use too, like if we're going to use worst-case, then we should see a rank ordered list
statistics are useful because they tell a story, but they can't tell the full story. Believing the science has always meant "by being skeptical" and it's irritating that so many in the mainstream don't want the narrative to be poked at
> you're not saying that the spike protein was exceptionally dangerous are you?
You're going way overboard with this.
Stop lying about them. Your statement about the sample size being the entire population is exactly wrong when the population size increases.
You brought up the Spanish flu which is a GREAT example of how you're blatantly abusing stats in another way too!
You're fixated on one stat: length.
The Spanish flu killed 1 in 150 Americans. Covid killed about 1.1M so far, which is 1 in 300. So if we are choosing to treat those as comparables, what happened? We traded a year of duration - and most of 2022 was pretty damn back-to-normal compared to 2020 and 2021 in a de facto sense even if we "officially" called it a pandemic still - for 1.1 million deaths instead of 2.2 million deaths. That seems pretty good, no?
Or maybe all pandemics are different after all?
Right now a significant number of people are dying from COVID and there's no restrictions on everyday life. I expect the same to be true in two months when the state of emergency is lifted.
So either COVID ended a while back or it won't end for a while. I happen to believe the latter, but regardless I don't see a case for 3 years.
Note also that I wasn't building any argument around "3" years so your argument undermines nothing.
Note also that your belief that it will be longer than 3 years is you arguing for a greater disparity to point out.
Why are you arguing this way? Next you're going to note that I use the spelling gray instead of grey to describe the matter that seems to be lacking here.
what is your stake in this? why can't you tolerate questioning of science? Questioning science is at the heart of science.
I don't think you are arguing honestly at all. No matter what stat I were to mention, you'd start screaming "you're fixated on one stat", then you ignore all the myriad medical treatment options available 100 years ago to now as if that wouldn't obscure the point your trying to make. Again, it's dishonest, you're dishonest.
If you go back to my first post I raise interesting an important questions. What are you so scared of? You must have some stake in the outcome, some stake that cannot bear normal scientific inquiry.
1) Proof by counterexample that not all pandemics end quickly
2) When we actively intervene many pandemics end quickly. This doesn't prove the intervention was necessary, but it obviously doesn't prove the intervention was unnecessary either.
In analogy form: "Most people are paid a salary. This shows working is unnecessary. I'll quit my job and keep getting paid an average salary".
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?
Looks like the NIH is a similar story of corruption.
That is 0.0001% of all the wasted money in COVID spending....
https://news.ycombinator.com/newsguidelines.html
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...
…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.
https://www.cbc.ca/radio/quirks/jun-12-missions-to-venus-lea...
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...
- 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...
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.
https://news.ycombinator.com/newsguidelines.html
This symptom never accompanied a flu IIRC, though I recall it happening in the past after alcohol intake.
(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.
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".
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...
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.
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'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).
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.
https://twitter.com/MikeOMara This account is actually pretty gut wrenching.
But it raises the philosophical question: what’s one life compared millions saved? That’s easy to say when you aren’t the one with (alleged) vaccine induced ALS.
It's more likely inflammatory induced muscle spasms, which could happen due to abuse of drugs such as ivermectin–if I were treating him (Army Medic, ~EMT-P equiv, not a doc), I'd recommend he stop taking it. A few months without ivermectin and maybe a muscle relaxer should do it.
After perusing his timeline some more, I get the feeling that doctors have told him this already and he's ignoring their advice in an antivax crusade that unfortunately media has perpetuated. He keeps asking for doctors to give him the Dx he wants, not the one he actually has. These lies are hurting real folks, and he is a prime example of it :/
Even if they did work for that, restricting human rights was still not the right thing to do.
You are getting your information from a bad source.
> restricting human rights was still not the right thing to do.
This is something worth debating, but if you refuse to concede the vaccines are useful then it isn't worth getting to that point in the debate.
Wrong. The evidence is that they suppressed symptoms, which people misunderstood as preventing infection/transmission.
https://www.ucsf.edu/news/2022/12/424546/covid-19-vaccines-p...
https://www.bmj.com/content/376/bmj.o298
https://www.nature.com/articles/d41586-022-02328-0
The reality is the vaccines do reduce transmission, just not as much as hoped. They are very effective at preventing infection, though that immunity wanes over time (just as immunity from infection does), but it does continue to help prevent serious illness from occurring.
That said, it sounds like you are conceding the point that the vaccines reduce transmission and are effective at preventing illness, which is good, and contradicts your earlier statements:
> there was never evidence these vaccinations prevented infection/transmission.
> The evidence is that they suppressed symptoms, which people misunderstood as preventing infection/transmission
(emphasis added by me)
Pfizer's press release very specifically did not say that. They correctly distinguished between SARS-CoV-2 (the virus) and COVID-19 (the disease caused by the virus), only claiming a reduction with the second and making no claims about the first. They avoided making any claims there because they did not test for the virus until after symptoms developed, making it impossible to make any claims about infection/transmission.
It was well-known for a month or two after the announcement, after which it got memory-holed hard:
https://www.washington.edu/news/2020/12/02/covid-19-vaccines...
https://www.businessinsider.com/who-says-no-evidence-coronav...
https://www.fredhutch.org/en/news/center-news/2020/12/covid-...
> That said, it sounds like you are conceding the point that the vaccines reduce transmission and are effective at preventing illness, which is good, and contradicts your earlier statements:
I stand by what I said. Note the timeline and that I used "was". The whole argument was about 2021 and early 2022, then you argued otherwise using evidence we only had in late 2022 and 2023.
You are refusing to admit you were factually incorrect, it's very disappointing.
Everyone knew that the trials did not specifically study transmission rates, I never disagreed with that. The fact is, as soon as the vaccinations went live we had massive data supporting it, and studies were done that completed in the next years that confirmed it. Societally, we knew the vaccines were effective at both preventing transmission (though not as effective as we'd like) and preventing infection (though for not as long as we'd like).
I'm done engaging because you refuse to admit you were wrong regarding the efficacy of the vaccine and are now changing your argument to be about a specific timeline, which is asinine - the studies to confirm what we were seeing in realtime with the vaccine rollout would _of course_ take longer than the trials that started the rollout.
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.
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.
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
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.
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...
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).
And from my non expert historical perspective, it sure seems to fit that profile.
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.
Occams razor would expect to see some of the same results with COVID.
Any kind of evidence against this would be much appreciated.
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
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.
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).
2. The flu is a known, covid was a near complete unknown. It's easy in hindsight to say that we shouldn't have locked down, but if the thing had mutated and wiped out half the planet, you'd be singing a different tune.
And actually, they didn't really care about those people, it was just that if those people were blocking up hospital beds, 'the rest of us' were going to start dying from the normal totally treatable things that happen to us. It was really about limiting the wider impacts, not helping someone in their 80s live a other 5 years (though I totally believe someone in their 80s or at any increased risk deserves that respect and support from the rest of society, and deserves people making small adjustments to protect them)
The idea that they helped or would help the average person is/was missinformation.
It was always about preventing significant downsides to minority of people who would see a positive average benefit from lockdowns (the sickly, elderly, immunicompramised, and those likely to need medical treatment during the pandemic.)
This isn't neccessarily a bad thing in general.
However, there were several areas where the harms of lockdown policies were ingnorantlly imposed without having much benefit at all, or with insufficient consideration for the harms caused.
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.
https://jondouglas.dev/long-covid/
And my recent one:
https://www.reddit.com/r/LongHaulersRecovery/comments/12iv4p...
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.
It absolutely didn't prevent me from experiencing long covid.
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.
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.
This isn't journalism. This is garbage. This article produces anger, not understanding.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.
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!