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Years into the pandemic, only a handful of clinical trials are targeting long COVID — here’s one of them

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Hundreds of patients have now flocked to Stanford Health Care’s long COVID-19 clinic in hopes of finding relief from the unusual symptoms that plague them.

Dr. Hector Bonilla headshot

Dr. Hector Bonilla, Stanford Health Care

Permission granted by Dr. Hector Bonilla


More than 85% have fatigue, which can make it difficult or impossible to get through a normal day, said Dr. Hector Bonilla, co-director of Stanford Health Care’s Post-Acute COVID-19 Syndrome Clinic, which opened its doors in May 2021. They also report brain fog, sleep disturbances, or dysregulation of the autonomic nervous system, which can cause their body temperature to fluctuate, their heart to race, or cause them to faint when they stand up quickly. Some 30% to 40% of them have symptoms that are so severe, getting out of bed is a struggle, Bonilla said.

While COVID-19 is newer virus on the global stage, this strange constellation of symptoms are familiar to Bonilla, who has spent years working with chronic fatigue syndrome patients, also referred to sometimes as myalgic encephalomyelitis (ME),which affects as many as 2.5 million Americans.

Often, these patients also had a flu-like illness before their ME symptoms began, and experts suspect an infection may trigger the condition.

For decades, doctors around the world have noted sporadic outbreaks of ME/CFS-like illness in people who appeared healthy but who were experiencing debilitating symptoms such as unrelenting fatigue, muscle pain, sore lymph nodes and brain fog. Several viruses and infections have been linked to ME/CFS and other post-acute infection syndromes including Epstein-Barr virus, Ross River virus, and a bacterial infection, Coxiella burnetii, sometimes referred to as Q fever.

A cure for ME/CFS has been elusive, and while some patients improve, others never regain their normal function. But because of the similarities between these conditions and long COVID, which is garnering significant attention from the medical community, that may soon change.

In 2021 the federal government allocated $1.15 billion in discretionary funding to long-COVID research to better understand its causes and uncover better ways to treat it. But these efforts have yet to result in an active clinical trial for treatments. Now, researchers at Stanford hope they’re closing in on answers that will unravel the mysteries of all these conditions.

Lingering mysteries

Researchers still don’t know whether symptoms of long COVID will eventually disappear because not enough time has elapsed to fully understand its impacts. Experts also don’t know how many people are affected by the disorder and estimates vary between 5% and 30% of people who contract the virus. All told, it may affect as many as 65 million people worldwide.

Long COVID — By the numbers



COVID patients who reported long COVID symptoms in Jan. 2023 — a drop from 19% in June 2022 — according to a Household Pulse Survey.



Long COVID patients who report having limitations in their day-to-day activities, according to a Household Pulse Survey.



Active clinical trials worldwide (phases 1-3) listed on that are testing drugs for long COVID.

The WHO defines long COVID as “development of new symptoms three months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least two months with no other explanation.”

The condition is linked to more than 200-plus symptoms, and occurs both in people who had severe COVID-19 infections that required hospitalization and those only sick with mild or asymptomatic infections, Bonilla said.

One recent JAMA Internal Medicine study found that the condition is more common in women — roughly two thirds of those being treated at the Stanford clinic are female — as well as in people over age 40, smokers, and people with a body mass index in the obese range. Patients who have more severe COVID infections are also at higher risk, but not everyone who develops the condition has these risk factors or underlying health problems.

Around 85% of the patients treated at the Stanford clinic were never hospitalized for COVID, Bonilla said.

“Something interesting that we see is people who have mild COVID and they recover completely, but weeks later they develop symptoms that have been correlated with long COVID symptoms,” he said.

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