WASHINGTON (AP) — The National Institutes of Health is beginning a handful of studies to test possible treatments for lingering COVID, a much-anticipated step in America’s response to the mysterious condition that affects millions.
Monday’s announcement of the NIH’s $1.15 billion RECOVER project comes amid frustration from patients who have struggled for months or even years with sometimes debilitating health problems — with no proven treatments and only a series of rigorous studies to test potential ones.
“This is a year or two late and smaller in scope than one might hope, but nevertheless it is a step in the right direction,” said Dr. Ziyad Al-Aly from Washington University in St. Louis, who is not involved in the NIH project but whose own research highlighted the long toll of COVID. It’s important to get answers, he added, because “there are a lot of people out there taking advantage of patients’ vulnerability” with unproven therapies.
Scientists do not yet know what causes long-term COVID, the collective term for about 200 widely varying symptoms. Between 10% and 30% of people are estimated to have experienced some form of prolonged COVID after recovering from a coronavirus infection, a risk that has declined somewhat since the beginning of the pandemic.
“If I get 10 people, I get 10 answers about how long COVID really is,” said US Health and Human Services Secretary Xavier Becerra.
That’s why the RECOVER initiative has so far tracked 24,000 patients in observational studies to help define the most common and distressing symptoms — findings that are now shaping multi-pronged treatment trials. The first two will look at:
— Whether taking up to 25 days of Pfizer’s antiviral drug Paxlovid can relieve long-term COVID-19, due to a theory that some live coronavirus or remnants of it can hide in the body and trigger the disorder. Paxlovid is usually used when people first become infected and for only 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 investigations 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 on exercise intolerance and fatigue is also planned, with the NIH seeking input from some patient groups concerned that exercise may do more harm than good for some long-term COVID patients.
The trials currently enroll 300 to 900 adult participants, but have the potential to grow. Unlike typical experiments that test one treatment at a time, these more flexible “platform studies” will let the NIH add additional potential therapies on an ongoing basis.
“We can turn quickly,” explained Dr. Amy Patterson of the NIH. A faulty treatment can be dropped without ending the entire trial, and “if something promising comes up on the horizon, we can hook it up.”
Flexibility could be the key, according to Dr. Anthony Komaroff, a Harvard researcher not involved in the NIH program but who has long studied a similarly mysterious disorder known as chronic fatigue syndrome, or ME/CFS. For example, he said the Paxlovid study “makes all the sense,” but if a 25-day dose shows only hints that it works, researchers could extend the trial to a longer course rather than starting from scratch.
Komaroff also said he understands people’s frustration with the wait for these treatment trials, but thinks the NIH appropriately waited “until there were some clues about the underlying biology,” adding, “You have to have goals.”
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