Millions of people are suffering from long COVID. Why is there still no treatment?

Shelley Hayden of Sonoma has a long COVID case so severe that her “brain is broken,” she said. The 54-year-old marketing coach asked not to be interrupted in the conversation so as not to lose her train of thought.

Berkeley’s Tyler Gustafson recovered from COVID-19 in 2020, then was struck last summer with what felt like a heart attack: deep, aching chest pain. His body was tingling. His blood pressure skyrocketed. His left side went numb and his thinking slowed. Even his vision got distorted. Worse still, the symptoms never stopped, so the management consultant went on sick leave. He was 30 years old.

Mysteriously, Gustafson began to recover. But Hayden still struggles with frequent “accidents” that leave her mentally and physically exhausted for days or weeks at a time.

Their terrifying and contradictory medical sagas – two among millions of COVID survivors with persistent symptoms – reveal the still murky nature of the syndrome that has mystified doctors and frozen pharmaceutical companies in their tracks, unsure where to direct their investments in the treatment.

Patients report feeling caught in quicksand.

“The approach to caring for people with long-term COVID is so wrong,” Hayden said. “I taught my doctors! »

Shelley Hayden walks with her lab, Theo, around her property in Sonoma.

Samantha Laurey/The Chronicle

Recognizing the need to address the issue more quickly, President Biden announced a National Long COVID Research Action Plan on April 5. It’s a public-private collaboration that will build on Recover, a $1.15 billion National Institutes of Health initiative to coordinate extensive COVID research at sites across the country, including UCSF and Stanford.

In the two years since patients and doctors identified the long COVID, researchers around the world have scanned, pricked and scrutinized thousands of people, hoping to uncover anything that could lead to a remedy for persistent symptoms ranging from exhaustion and brain fog to racing heartbeats. and loss of smell. They think about a third of unvaccinated COVID survivors have persistent symptoms, and about half the number of vaccinated patients.

Scientists are gradually discovering more about the syndrome, said Dr. Steven Deeks, co-principal investigator of UCSF’s LIINC research study, or Long-Term Impact of Novel Coronavirus Infection. LIINC alone has published 18 articles, including a new one suggesting that the COVID drug Paxlovid can relieve persistent symptoms.

Researchers point to three likely causes of a long COVID: virus fragments that remain hidden in the body, persistent inflammation caused by the coronavirus, and autoimmunity – when the body’s own immune system turns against itself. .

These, in turn, wreak havoc in four main ways, Deeks told state lawmakers during a hearing in March. They cause neurological symptoms like confusion, debilitating fatigue, cardiovascular problems, and a unique condition called POTS – postural orthostatic tachycardia syndrome – where the heart races when the victim stands up.

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