When Charlie McCone contracted COVID-19 in March 2020 in San Francisco, he was 30 years old, otherwise healthy and fit, and not considered high risk. His doctors told him he would be fine in a few weeks. He didn’t do it.

Finally, after weeks of being sick and no real answers from his doctors, he turned to that place many of us turn to for medical information: the Internet.

“I found a Facebook group with thousands of other people asking what was going on, and I was like, ‘Oh my God,'” he said, “‘This is happening to so many other people.’

It had already become clear then, in the spring of 2020, that COVID could cause serious, lasting problems, including debilitating fatigue and brain fogamong many other symptoms. Because there was so much attention on COVID at the time, McCone said, “there was a lot of hope about the long, I think, first couple of years response to COVID.”

Then in the end of 2020Congress has appropriated more than $1 billion to the National Institutes of Health for long-term research on COVID. “There was this feeling that we would have answers here in a few years,” he said.

But now a few years have passed and that feeling has changed.

McCone is still sick. He no longer works and can’t walk more than a block. About 20 million People in the US are now estimated to have long-lasting COVID, maybe longer. And that $1.15 billion the NIH received for the RECOVER program — which stands for Researching COVID to Enhance Recovery — paid off. few answers and zero treatments approved so far.

“There was a lot of frustration with the program moving slowly and also focusing a lot on the observational side of things,” said Betsy Ladyzhets, co-founder and managing editor of the magazine. Sick timesa nonprofit news site focused on long COVID.

Most of the research money has been trying to learn more about how long COVID is—in clinical research, data collection and analysis, and electronic health record studies.

“Rather than what a lot of people in the patient community and also the research community really want, which is focused on treatments, clinical trials,” Ladyzhets said.

There is good reason for focusing on observational research, according to Dr. Serena Spudich, a neuroscientist and researcher at Yale who works with the RECOVER program.

“There needs to be a very, very strong urgency to find treatments,” she said. “And at the same time, we will only find treatments if we get the condition right.”

And understand what causes the many different types of symptoms that people have.

“Because long-term COVID is not a single condition, it’s a very heterogeneous condition,” Spudich said. “And it’s very, very possible, I’d say even likely, that different forms of long-term COVID — for example, the more neurological forms versus something like severe dyspnea or heart rhythm problems — they may actually be due to different types. of biological mechanisms that require different treatments.”

Outside researchers agree that these types of observational studies and data collection are critical, but some believe the NIH should not have spent nearly $1 billion on them.

Dr. Ziyad Al-Aly, director of the Center for Clinical Epidemiology and chief of the Research and Education Service at VA Health System St. Louis, said his team and others did similar research early in the pandemic, “for peanuts, a few hundred thousand dollars that generated much more robust, faster evidence, years before RECOVER, for a small, small, small , small part of the funds.”

At this point, more than four years later, “NIH should be laser-focused, laser-focused on finding a cure for long-term COVID,” he said.

This will be a greater focus in the future. NIH received another 515 million dollars this year for RECOVER and plans to invest much of it in clinical trials.

This fall, there was a launch meeting for the next phase of the RECOVER program, called RECOVER-TLC, which stands for Treating Long COVID. Now, Joseph Breen of the NIH’s National Institute of Allergy and Infectious Diseases said he is in the process of request for ideas for trial drugs and other treatments.

“We have every intention of starting as soon as possible,” he said. “In reality, we’re probably next year.”

David Putrino, director of rehabilitation innovation for Mount Sinai Health System in New York, has done extensive research on COVID since 2020. He said how clinical trials are designed will be critical.

“What we need to do is rapidly test as many drug targets as possible, rather than making big changes,” he said. It means that instead of putting all the funding into a few large, expensive trials of a few drugs, RECOVER could do a bunch of smaller trials.

“For a few million dollars each, they could test 100 drugs. And they could record the responses of those 100 drugs and move on to more sophisticated clinical trial strategies,” Putrino said. “That’s where I think we should be applying the money.”

Many long-time COVID patients and advocates are cautiously optimistic about the next phase of research. Charlie McCone, who has become something of an expert on his own disease and now volunteers with Patient-led research collaborationhe was at the launch meeting and left feeling a little more hopeful.

“NIH can do this right, they have to do this right,” he said. “And they have to do it quickly, which we know is possible.”

But whatever comes from this current slate of funding, he said more will be needed. “No disease can be solved with a single investment. And so, just because this first billion dollars didn’t produce much, doesn’t mean the next billion and the next billion won’t.”

Some lawmakers are already pushing for additional funding. Sen. Bernie Sanders, a Vermont independent, along with several Democratic senators, presented Long COVID Research Moonshot Act in the Senate and a companion bill was introduced in the House. The Moonshot Act would provide $1 billion a year for 10 years for long-term research on COVID. It has not yet been brought up for a vote.