The National Institutes of Health is beginning a handful of studies to test possible treatments for long COVID, an anxiously awaited step in U.S. efforts against the mysterious condition that afflicts millions.
The announcement from the NIH’s $1.15 billion RECOVER project comes amid frustration from patients who’ve struggled for months or even years with sometimes-disabling health problems — with no proven treatments and only a smattering of rigorous studies to test potential ones.
“This is a year or two late and smaller in scope than one would hope but nevertheless it’s a step in the right direction,” said Dr. Ziyad Al-Aly of Washington University in St. Louis, who isn’t involved with NIH’s project but whose own research highlighted long COVID’s toll. Getting answers is critical, he added, because “there’s a lot of people out there exploiting patients’ vulnerability” with unproven therapies.
Scientists don’t yet know what causes long COVID, the catchall term for about 200 widely varying symptoms. Between 10% and 30% of people are estimated to have experienced some form of long COVID after recovering from a coronavirus infection, a risk that has dropped somewhat since early in the pandemic.
“If I get 10 people, I get 10 answers of what long COVID really is," U.S. Health and Human Services Secretary Xavier Becerra said.
That's why so far the RECOVER initiative has tracked 24,000 patients in observational studies to help define the most common and burdensome symptoms –- findings that now are shaping multipronged treatment trials. The first two will look at:
— Whether taking up to 25 days of Pfizer's antiviral drug Paxlovid could ease long COVID, because of a theory that some live coronavirus, or its remnants, may hide in the body and trigger the disorder. Normally Paxlovid is used when people first get infected and for just five days.
— Treatments for “brain fog” and other cognitive problems. They include Posit Science Corp.’s BrainHQ cognitive training program, another called PASC-Cognitive Recovery by New York City’s Mount Sinai Health System, and a Soterix Medical device that electrically stimulates brain circuits.
Two additional studies will open in the coming months. One will test treatments for sleep problems. The other will target problems with the autonomic nervous system — which controls unconscious functions like breathing and heartbeat — including the disorder called POTS.
A more controversial study of exercise intolerance and fatigue also is planned, with NIH seeking input from some patient groups worried that exercise may do more harm than good for certain long COVID sufferers.
The trials are enrolling 300 to 900 adult participants for now but have the potential to grow. Unlike typical experiments that test one treatment at a time, these more flexible “platform studies” will let NIH add additional potential therapies on a rolling basis.
“We can rapidly pivot,” Dr. Amy Patterson with the NIH explained. A failing treatment can be dropped without ending the entire trial and “if something promising comes on the horizon, we can plug it in.”
The flexibility could be key, according to Dr. Anthony Komaroff, a Harvard researcher who isn’t involved with the NIH program but has long studied a similarly mysterious disorder known as chronic fatigue syndrome or ME/CFS. For example, he said, the Paxlovid study “makes all sorts of sense,” but if a 25-day dose shows only hints of working, researchers could extend the test to a longer course instead of starting from scratch.
Komaroff also said that he understands people's frustration over the wait for these treatment trials, but believes NIH appropriately waited “until some clues came in about the underlying biology," adding: “You’ve got to have targets.”
© Copyright 2023 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed without permission.
22 Comments
virusrex
One of the worst consequences of the politicization that covid was subjected in the US is this, unethical groups have tried to misrepresent a lot of things about covid in order to further their goals and this have caused a huge delay in necessary research to correctly identify and treat long term consequences of the infection. People worked very hard to convince others that the infection was not dangerous neither in the acute or chronic phase, even while doctors were raising alarm all the way. Unfortunately this made very difficult to raise funds to be used precisely to clarify the situation and deal with any identified risks.
餓死鬼
I remember some proponents of alternative science were pushing ivermectin as a treatment (or was it supposed to be a preventative?) for Covid back in the day. How did that work out? I haven’t heard anything about it at all recently.
Algernon LaCroix
Not "alternative science" or "The Science™", just science. Doctors on the ground - real ones dealing with real patients, not the bureaucrats - found that it almost invariably worked as a preventative measure or in the first few days of symptoms appearing. But because it's off patent and huge sums of money can't be made from it, ivermectin was demonised by the jab makers and the media, etc. owned by the same conglomerates. Oh, and emergency use authorisation couldn't be obtained for the jabs if there were existing therapies available, so any any existing rivals to the jabs had to be eliminated.
The usual suspects will of course toss their favourite epithets around. But if you're genuinely curious, visit the Front Line COVID-19 Critical Care Alliance (FLCCC) to find out what doctors who actually care about patients - including those with LONG COVID - have been doing to save lives instead of pursuing wealth at power at the public's expense. Ignore that tired fallacy of appealing to the false consensus, which keeps popping on these threads.
virusrex
No, they did not, some people claimed this, but when asked to present the data it was all found to be false, incorrect or product of their bias. Science disproved those claims completely a long time ago, even discovering cases where researchers made up their evidence and articles had to be retracted for it.
Completely false, dexamethasone for example is dirt cheap and that did not stopped doctors from recognizing it was very useful to treat complications of covid, even if it could be replaced with drugs hundreds of times more expensive, this clear example proves that the conspiracy theory you believe is completely false.
The FLCCC has repeatedly been found lying and recommending protocols of treatment that can be proved to expose the patients to much higher risks unnecessarily, they never produce any evidence to prove those protocols, just expect people to believe the scientific community is wrong and they are right, just because.
You have been asked to provide any reference for an institution of science or medicine that supports your beliefs, you have been unable to do it at all, not even onece, that clearly proves the consensus is real even if you personally don't want to accept it.
Strangerland
This is what the anti-vaxxers try to claim...
Gaijinjland
Are they sure long covid isn’t just in the minds of hypochondriacs that manifest into physical ailments? Statistically the numbers would add up to the percentage of hypochondriacs with severe anxiety issues in any given society. The mind is a powerful thing.
餓死鬼
Okay thanks, had never heard of that before.
One of the videos on there seems to be arguing against the use of remdesivir. Didn’t Mr. Trump use remdesivir for treatment when he had Covid? How come it didn’t work for this particular patient? The video doesn’t give much information other than “Larry was healthy and unvaccinated”.
Bad Haircut
Nup, it's what people who are able to discern fact from fiction were able to figure out. An ability far beyond the limits of people who can only pull out the lame slur of "anti-vaxxer". Back to kindergarten for you, Strangerland.
virusrex
If that were the case it would be terribly easy to find out a stronger correlation between previous ailments and long covid than between the infection and the syndrome. Subjective symptoms are very difficult to characterized objectively, but that do not make them imaginary.
Pretending the whole scientific and medical communities of the world are in a global conspiracy points out to the opposite, primary sources of scientific knowledge clearly debunk this false belief.
Also, personal attacks instead of arguments also help to show who are the ones without evidence to support their claims.
Strangerland
That's what the anti-vaxxers like to say.
And I mean, we all know they are right, because a good google is much more informative than a scientist who went to school for a subject, and studies it for a living.
Bad Haircut
Um, the people who figured out that ivermectin WORKS are doctors who work in the field and study medicine for a living.
Nice own-goal, Strangerland.
Raw Beer
Yes! Their site is very informative, with lots of recommendations for before, during, and after infection.
Indeed, as was hydroxychloroquine, vitamin D, and others.
Yeah, you keep bringing up dexamethasone. But it's not used to treat the infection, at the early stages. It's one among many corticosteroids that can be used to treat the after effects. It's in a completely different category.
virusrex
Yet they could not present valid data to prove it, which means they are not as professional as they wanted to present themselves.
When the information is incorrect or demonstrabily false as the FLCCC repeatedly have presented this can't be described as informative, instead it is misleading.
Still demonstrably false, as shown by the best available data collected.
Yeah, you keep bringing up dexamethasone. But it's not used to treat the infection, at the early stages.
That is irrelevant, the argument for the supposed conspiracy is that cheap treatments are hidden so expensive ones are pushed instead, it does not matter at what point the treatments are used if this was true dexamethasone would not be recognized as effective (since it makes hugely profitable options unnecessary) but it is recognized as effective and efficient in the treatment without any problem, so proving the conspiracy makes absolutely no sense.
CommodoreFlag
https://www.nature.com/articles/s41429-023-00623-0
"Prophylactic administration of ivermectin reduces the severity of pathological changes associated with SARS-CoV-2 infection"
For the record, I'm not a proponent of using Ivermectin to treat Covid but I think the massive backlash against it was frankly quite weird.
virusrex
It was actually a mild response against the huge misinformation campaign that tried to mislead people into getting unnecessary risks with a treatment that had no benefits founds in patients, no matter at what time the drug was used.
When you have clinical evidence in actual patients that show lack of response, animals studies are not enough to refute that evidence, specially when the experimental treatment is done at 10 milligrams/kg while in humans it is used at 0.15 milligrams/kg 50 times the usual dosage is not something that can safely used for humans, even the usual dose have known risks.
JohnnyTheWad
Kid is getting flustered.
cuddly
Yes, as many experts of the world agree.
virusrex
Not even one institution of medicine or science, not any expert that can show clinical data to prove this claim.
Once again, giving 15 times the usual dose to hamsters to show an effect do not disprove clinical data in actual patients that shows complete lack of effect.
Bad Haircut
virusrex, your argument is a red herring.
When it comes to emergencies like the one we had, sometimes other means are necessary to trial off-label use for drugs that are already demonstrated to be safe, so there was no little to no downside to administering IVM or HCL etc when doctors in the field suspected that those drugs could be beneficial. Turns out they were - much to the detriment and disgust of the jab makers and institutions of medicine and science they own through funding and junkets.
But clinical trials are crucial before introducing new drugs to the market. And they're especially important when governments effectively mandate them in order for people to participate in normal life. Yet strangely enough, there was one major jab maker, possible more, that tried to hide unfavourable trial results and colluded with the regulator to suppress those results for decades. Why? Thankfully a court thought this was insane and forced them to release the documents, which have been dutifully ignored by the legacy media.
virusrex
No, it is not, the only argument that should matter about the use of something is if it is safe and effective, there is no point in using something off label when it bring no benefit for the health problem and instead just increase the risks for the patients.
That means a very real downside for no benefit, thus the professionals demonstrated there is no reason to use it.
That is false, it turns out they were not effective at all, as the most important institutions of medicine clearly concluded after the clinical data from many different trials became available. Pretending your personal belief triumphs what the medical community of the world have showed is not a valid argument.
Again, this supposed conspiracy was very easy to demonstrate false, other very cheap drugs had no problem being recognized as effective, even if they hurt profits of pharmaceutical companies, this would be impossible if your argument held any weight.
Nothing of the sort happened, specially when now we have data from literally billions of doses that support what the clinical trials reported, pretending the only data we have about something is from the trials is simply misleading, clinical data from patients is several orders of magnitude better, and it clearly disproves what you want to push.
Ignore the media, go to the scientific publications that the medical community uses to make decision, those original sources still say the drugs you want to present as effective are not useful at all for covid patients.
Raw Beer
Many of us have provided several peer-reviewed studies of the years, including RCTs that show it works. Hope you don't expect us to fish them out for you again...
Nah, no falsehoods have been demonstrated. BTW, another thing the FLCCC makes very clear is how the large IVM studies that are funded (directly or indirectly) by pharma were clearly designed to fail.
You keep repeating that, not understanding or unwilling to accept that those institutions of medicine or science are captured.
virusrex
Specially when those references had to be retracted for containing false or fabricated data, the same reason why every institution of medicine in the world agrees the drugs you keep trying to misrepresent as effective bring no benefit to covid patients.
Of course they have,
https://www.sciencedirect.com/science/article/pii/S2214750021000445
https://www.mdpi.com/1999-4915/13/6/989
https://www.researchsquare.com/article/rs-100956/v4
etc.
They were designed to be clear and scientifically congruent, of course for drugs that bring no benefit this means this becomes also clear, which is why those trying to be in denial of scientific evidence find them impossible to accept, when the evidence disproves their beliefs their only option is to be in denial of the science.
Every single institution, of the whole world, that is not even remotely believable.