June 16, 2024

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For the burgeoning population of covid long-haulers, there is an abundance of new treatment options: Specially formulated nutraceuticals imported from India that promise to “get you life back from covid.” Pure oxygen delivered in a pressurized chamber. And, if time and money are no obstacle, a process known as “blood washing” that’s available in Cyprus, or $25,000 stem cell treatments in the Cayman Islands.

Months-long waits at long-covid clinics combined with the sluggish pace of research have left vulnerable patients clamoring for immediate care as manufacturers bring novel remedies to market, often with little data behind them.

“I have tried, I would say, as many different things as anyone could do in my situation,” said Donna Davis-Doneghy, a 62-year-old accountant with Hearthside Food Solutions in London, Ky., who has been tormented by headaches since coming down with covid in November 2020.

“People will say to me, ‘Here’s a phone number,’ and off I go chasing something different,” said Davis-Doneghy, whose treatment regimen has ranged from acupuncture and Botox to nerve-block injections and vitamin infusions.

Long covid has taken to new heights a medical conflict that shows up with cancer and other dire diagnoses: the tension between the desire for evidence and the pressing needs of patients who are suffering. In their rush for relief, patients are turning to unproven treatments, putting them at risk of potentially harmful health effects as well as having their hopes dashed and their wallets emptied. Doctors often follow the practice of prescribing drugs off-label, not for the purpose the Food and Drug Administration originally approved them for.

For these three long haulers, debilitating symptoms and fatigue has kept them from returning to work — and in return, struggling to navigate their new normal. (Video: Drea Cornejo, Joy Yi, Colin Archdeacon/The Washington Post, Photo: Carolyn Van Houten/The Washington Post)

What you need to know about the latest on long covid

“You want to protect people from charlatans,” said Harlan Krumholz, a professor of medicine at the Yale School of Medicine. “We need to resist the temptation to adopt tests and treatments without sufficient evidence to justify their use.”

But until researchers discover the mechanism — or, more likely, mechanisms — that cause long covid, clinicians are having to rely on their experience treating other illnesses.

“We’re kind of stuck,” said Michelle Haddad, a neuropsychologist who runs a long-covid clinic at Emory Rehabilitation Hospital in Atlanta. “I can define areas where you have impairments and how impaired you are. I can tell you what works in other, similar conditions. But I don’t have a magic pill.”

The scale of the problem — and opportunities for profiteering — are increasing as the number of Americans reporting long-lasting symptoms ramps up to as many as 15 million adults. Data released this summer by the Centers for Disease Control and Prevention suggests that almost 15 percent of the population has had long covid, or symptoms

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