'Screaming Into a Void': Long COVID Patients Have Waited in Vain for Years for Treatments

After contracting COVID-19 at the onset of the pandemic more than three years ago, Charlie McCone is still very much hostage to the disease.

“I can shower myself and I can do that stuff, but that’s kind of about it,” said McCone, a previously healthy Bay Area man in his 30s. “If I have to make lunch, I’m laid out for a couple of hours. If I have to make dinner, it’s doomsday. I can’t stand up for longer than five minutes without all of my symptoms going haywire.”

McCone is among the millions of Americans with long COVID, a condition broadly defined as a collection of often-debilitating symptoms — everything from brain fog and fatigue to respiratory and heart problems — that can develop or intensify after an initial COVID infection.

“This isn’t a mild condition. This is completely life-altering,” said McCone, who notes that many other long COVID patients are in even worse shape than he is. “We have patients who are taking their lives. This is the fastest-growing health crisis in America.”

Amid the end of the federal health emergency earlier this month, as the vast majority of people in this country have ditched their masks and resumed their pre-pandemic lives, McCone and other long COVID patients say they feel largely left behind, and see no end to their suffering.

“My biggest frustration right now isn’t in my symptoms,” McCone said. “It’s in the lack of action around doing things we know could help patients right now.”

McCone and other long COVID patients and advocates have for years pushed state and federal health agencies to begin trials for long COVID treatments, underscoring the urgency of the situation, but say their efforts have gained little traction.

“A lot of times it feels like the patient community is screaming into a void,” said Lisa McCorkell, an Oakland resident who has experienced long COVID symptoms for more than three years, and who now runs a group that advocates for patient-involved research on the condition. “It really feels like [we’re] not being heard a lot of the time.”

But the National Institutes of Health, which in 2020 received more than $1 billion to research long COVID, says it’s taking a cautious, big-picture approach.

“We are being a little more deliberate. Particularly to try and get something to have a high-effect size in patients and really make a big difference,” said Dr. Walter Koroshetz, co-chair of the NIH’s RECOVER Initiative (Researching COVID to Enhance Recovery). “[We want to] test therapies which we think might help reduce the symptom burden in people who are suffering.”

Koroshetz said he understands the frustration long COVID patients feel, but noted that even though it’s not a new condition, “how it happens in people is not well understood.”

Nevertheless, Koroshetz says he’s confident treatments to reduce debilitating symptoms will be available fairly soon.

“We’re also hoping to test drugs that go after the main culprit for the biological cause of long COVID,” he added.

But so far, the NIH has not started a clinical trial for possible treatments. One of the only official long COVID clinical trials is underway at Stanford University, to determine whether Paxlovid can be an effective treatment. But it isn’t even being led by the NIH, and results aren’t expected until late this year.

Dr. Steven Deeks, an infectious disease specialist at UCSF who has extensively researched long COVID, argues that clinical trials for possible treatments should have started months ago.

“Based on the fact there’s anecdotes of people getting better with antiviral therapy, yes, it’s an absolute urgency right now to study, in a controlled manner, all of the antiviral therapies that we have available,” he said.

Part of the problem, Deeks argues, is the lack of buy-in from pharmaceutical companies, in stark contrast to their involvement in developing an initial COVID vaccine.

“The drug companies realize there’s this great unmet need. They realize there’s this market for a drug and there’s money to be made,” he said. “But right now I think they’re waiting on the sidelines for academic groups to get better clarity.”

Hundreds of symptoms have been linked to long COVID, and there is little data tracking how many people actually have it, all of which has made it difficult to clearly define the condition and expedite efforts to treat it, notes David Putrino, a physical therapist at Mount Sinai Health System in New York who has worked with scores of long COVID patients.

“Long COVID really is anyone who has contracted an acute COVID infection and at the three-month point is still feeling unwell and worse than they did before their acute COVID infection,” he said.

Nevertheless, the apparent lack of urgency from government health agencies is troublesome, says Dr. Monica Verduzco-Gutierrez, chair of rehabilitation medicine at the University of Texas Health Science Center at San Antonio, who runs a long COVID clinic.

“Part of me is like, ‘OK, they put a lot of effort in vaccines and treatments at the front lines and, yes, that’s wonderful. People aren’t dying,’” she said. “But there are now millions of people with long COVID who are suffering tremendously. I’m seeing these patients and they want some treatments now to help them. And so it’s frustrating to not be able to say, ‘OK, let’s try this right away,’ or, ‘Oh, this has been proven.’ We don’t have that, and the patients need it.”

Lisa McCorkell, of Oakland, couldn’t agree more.

“There’s definitely enough that we know about long COVID for us to be ready for clinical trials,” she said. “And given the scale of the issue, we’re at the point to see if any of those work in resolving long COVID completely or at least managing symptoms.”