USA Stat News: The NIH has poured $1 billion into long Covid research — with little to show for it

[Sly Saint]

WASHINGTON — The federal government has burned through more than $1 billion to study long Covid, an effort to help the millions of Americans who experience brain fog, fatigue, and other symptoms after recovering from a coronavirus infection.

There’s basically nothing to show for it.

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.

There’s no sense of urgency to do more or to speed things up, either. The agency isn’t asking Congress for any more funding for long Covid research, and STAT and MuckRock obtained documents showing the NIH refuses to use its own money to change course.

“So far, I don’t think we’ve gotten anything for a billion dollars,” said Ezekiel Emanuel, a physician, vice provost for global initiatives, and co-director of the Healthcare Transformation Institute at the University of Pennsylvania. “That is just unacceptable, and it’s a serious dysfunction.”

Eric Topol, the founder and director of the Scripps Research Translational Institute, said he expected the NIH would have launched many large-scale trials by now, and that testing treatments should have been an urgent priority when Congress first gave the agency money in late 2020.

“I don’t know that they’ve contributed anything except more confusion,” Topol said.

Patients and researchers have already raised alarms about the glacial pace of the NIH’s early long Covid efforts. But a new investigation from STAT and the nonprofit news organization MuckRock, based on interviews with nearly two dozen government officials, experts, patients, and advocates, and internal NIH correspondence, letters, and public documents, underscores that the NIH hasn’t picked up the pace — instead, the delays have compounded.

It’s difficult to pinpoint exactly why progress is so stalled, experts and patients involved in the project emphasized, because the NIH has obscured both who is in charge of the long Covid efforts and how it spent the money.

Many people with long Covid have similar symptoms to people with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), a debilitating condition that often follows viral infection. The defining feature of ME/CFS is intense fatigue and worsening of other health issues after physical or mental activity. This symptom, known as post-exertional malaise, often occurs with a lag, which can make it tough for doctors to diagnose — and even for patients to recognize themselves.

Alex Hogan/STAT
“What often happens is, people will go for a walk, they may not feel it for a day or two, and then suddenly, they feel ill on the third day,” said Adam Lowe, a ME/CFS patient and co-founder of advocacy group U.K. branch of the Myalgic Encephalomyelitis Action Network, or MEAction. Patients might suddenly become bed-bound and have trouble focusing, he said.

This worsening of symptoms happens because a patient isn’t producing and using energy in the same way as a healthy person, said Todd Davenport, a professor at University of the Pacific who has studied exercise and this condition. It’s an internal change similar to the whole-body exhaustion that a marathon runner might experience at the finish line of their race.

A number of past studies and surveys of patients have demonstrated how dangerous exercise can be for people with ME/CFS. Many patients told to exercise by their doctors later dropped out of studies or treatment regimens, citing worsening symptoms. One infamous trial that pointed to exercise as a potential treatment was later discredited as deeply flawed.

Studying exercise as a treatment could “frame long Covid as something that can be overcome with grit and hard work,” said Jaime Seltzer, the director of scientific and medical outreach at MEAction, arguing that such framing is “unsound and ethically troubling.”

Not all patients with long Covid experience post-exertional malaise, and those who don’t could find exercise helpful, Davenport said. In those cases, slow and careful exercise through a rehabilitation or physical therapy program might help repair energy systems that have fallen out of shape.

https://www.statnews.com/2023/04/20/long-covid-nih-billion/

 

[Creekside]

What if they'd put that money up as prizes: first to develop a reliable test for long-covid; treatments that work for x% of patients; discovering the actual mechanism behind the persistent state or even some of the symptoms? Do such prizes work in the medical field?

 

[Wyva]

I think this shows that the problem is not simply the lack of money to do enough research but the inability to give the money to the right people to do the right kind of research. If my memory serves me right, many researchers involved do not even have experience with post-infectious syndromes (and I think this has been raised by patients too as an issue, that they were ignoring past ME/CFS research). This is also kind of what happened with the money for ME/CFS research recently, when scarce resources were spent on a cancer-related fatigue study. Now I wonder if more money spent on ME/CFS research would also mean more wasted money, given to the wrong people for useless studies. I know that we are not really threatened by this scenario (/sarcasm) but it makes me wonder.

 

[Creekside]

Now I wonder if more money spent on ME/CFS research would also mean more wasted money, given to the wrong people for useless studies.

I did donate to ME/CFS research back when I realized that it was what my mysterious disease was. Since then, what I've read about projects it's being spent on, and the results, hasn't convinced me to donate any more. They haven't convinced me that they're spending the money wisely.

 

[belbyr]

I sure hope Prusty and Nath can make some jaw dropping presentations soon because I am feeling raked over the coals.

I hate seeing $ for research being squandered.

 

[Charles B.]

“They spent $1 billion and found nothing. What more do campaigners want?” - the usual suspects

 

[rvallee]

There is simply no other context where a billion+ dollar is wasted with nothing to show for it where heads don't roll and entire departments aren't reformed.

For sure it happens a lot. Meta has wasted billions on their VR thing. But they're not doing the same thing in loop, they adapt and change methods and leadership.

It's the complete apathy that is enraging. They wasted a billion dollar that millions needed to produce results, and no one seems to care from within the system. Only the patients are raising any concern, and all other concerns are voiced simply on the back of the patients doing most of the awareness and work.

This system is not working for the patients. It is working for self-interest, career-building and professional networking. The whole system of healthcare needs massive reform, it's stagnated so much that all other disciplines have passed it by in terms of performance. The cutting edge keeps getting sharper, but the rest of the knife is basically not even holding on together. The foundations have been eroded to the point where they barely support a blade.

We keep being proven right. Advocates said this was being set up wrong. We warned that it would happen. We were ignored. We warned that research would need patient oversight and co-leadership or the effort would fail, and sure enough the effort failed. The infinite tolerance for failure is what has to end. In every other expert profession, experts are expected to deliver. The lack of ambition has to be turned upside down entirely, it's as if they all lost the ability to even think that things can be any better.

 

[Hubris]

I think this shows that the problem is not simply the lack of money to do enough research but the inability to give the money to the right people to do the right kind of research.

What happened here is very simple. At NIH, aside from Nath, nobody thinks ME/CFS is real. Because of this, the NIH long covid studies were designed to figure out not the cause of the patients' symptoms, but simply if there was any "real" pathology like obvious organ damage. The things they are testing for on their 20000 patient cohort are things that we already know to be negative in ME. Basically, they are doing the tests that you and I have already done with our physicians to rule out other illnesses.

Because the doctors involved in this study already have a strong suspicion that nothing will turn up (and they are probably right, because they are looking for things we already know to be negative in ME) they are using the money to give themselves a fat paycheck instead. The NIH has already spent more than half a billion just to "catalogue symptoms", which is a different way of saying it's gone into their pockets.

So, yes, having money it's not enough. It needs to be used properly. As long as 99% of doctors think ME is a fake illness, they will just use the money to pay their own salary while doing nothing. There is zero motivation to accomplish anything here.

 

[Sid]

Not surprising to see that a billion has been squandered. I never expected that any useful information would come out of these studies. Most research these days is a scam to keep huge academic bureaucracies going.

 

[Sly Saint]

Didn't a similar thing happen with ME/CFS funding back in the '80s(?), when a large sum of money was supposedly 'ring fenced' for CFS research (NIH/CDC?) and then later it was shown to have been spent on all sorts of un-related projects.
It was nowhere near a billion but still a lot of money wasted.

 

[CRG]

The Stat article is a hideous confection of appeal to authority (Topol and his Institute) multiple unreferenced assertions, unreferenced statistics, and at least one glaring fallacy, that of "illness axiomatically = treatment".

The article tells us nothing about the quality of the research that has been funded by the NIH, has $768 million really been wasted ? It couldn't possibly be that science is difficult, that a Pandemic disease produces vast complexity of impacts and that there are no simple answers that warrant humans being given inappropriate, potentially negatively life changing treatments ?

Setting aside the absurd conflation of ME/CFS with PASC, it is ironic that the quoted (with approval) Davis, McCorkell, Vogel and Topol list: Table 1 Summary of candidate treatments and supporting evidence starts with an anti for CBT and GET but gives a plus (on very thin grounds) for anti coagulants, apheresis and Stellate ganglion block, along with other dubious interventions. Hopefully there'll be resistance to the 'we must have treatments whatever the evidence' trope but in that bit of US healthcare that is demand (give me now) led I'm guessing the response ' the science doesn't warrant it' will not be well received.

 

[Creekside]

There is simply no other context where a billion+ dollar is wasted with nothing to show for it where heads don't roll and entire departments aren't reformed.

Aren't there examples of government boondoggles where there was just a minor fuss about not getting the desired result, but no heads really rolled, and they all just moved on to the next boondoggle? I can vaguely recall military R&D projects and infrastructure projects that were good examples of bad management, but I don't recall any real rolling-heads. How many top careers (managers, politicians) had to retire in shame over some of those wasteful Olympic games projects?

 

[rvallee]

Didn't a similar thing happen with ME/CFS funding back in the '80s(?), when a large sum of money was supposedly 'ring fenced' for CFS research (NIH/CDC?) and then later it was shown to have been spent on all sorts of un-related projects.
It was nowhere near a billion but still a lot of money wasted.

For sure the NIHR Long Covid fund can be put on that list. Way smaller, but essentially just as wasted.

A system that isn't bothered with wasting 90% of efforts to begin with, efforts that never had a chance of being useful, is not going to deliver much. A system that cannot reform itself away from wasting most of what it does is badly in need of accountability and oversight, as it clearly won't figure out why it makes sense not to waste 90% of what it does for starters.

You have to add on top of that the fact that barely 10% of research is actually useful, simply because of difficulty and the role of chance. So that leaves 1% utility, if at that. Absurd. This is how zero progress happens in a full century: with a mix of complete indifference, and some applause and awards handed out to the people who failed worst of all. What a system.

 

[rvallee]

Aren't there examples of government boondoggles where there was just a minor fuss about not getting the desired result, but no heads really rolled, and they all just moved on to the next boondoggle? I can vaguely recall military R&D projects and infrastructure projects that were good examples of bad management, but I don't recall any real rolling-heads. How many top careers (managers, politicians) had to retire in shame over some of those wasteful Olympic games projects?

There are loads of failures like this in business and politics. Just not in expert professions, by professionals and with full support from the entire profession.

Failures like this are usually caused by not listening to experts. Here it's the professionals themselves making the wrong decisions for the wrong reasons. This is unique to medicine, thanks to the standard practice of gaslighting, which is also unique to all the professions. No other professionals can point at a collapse bridge and somehow boast about how useful and wonderful it is. It's too ridiculous to consider.

 

[RedFox]

Aren't there examples of government boondoggles where there was just a minor fuss about not getting the desired result, but no heads really rolled, and they all just moved on to the next boondoggle? I can vaguely recall military R&D projects and infrastructure projects that were good examples of bad management, but I don't recall any real rolling-heads. How many top careers (managers, politicians) had to retire in shame over some of those wasteful Olympic games projects?

Absolutely. There's plenty of examples of government mismanaging projects, but I think LC research is more vulnerable to this because it's not taken seriously.