Millions of people suffer from long-term COVID. Why is there no treatment yet?

Sonoma’s Shelley Hayden has a long history of COVID so severe that her “brain is broken,” she said. The 54-year-old marketing coach asked that she not be interrupted in the conversation so that she would not lose her way of thinking.

Berkeley’s Tyler Gustafson recovered from COVID-19 in 2020, and was later hit last summer with what felt like a heart attack: deep, painful chest pain. Her body pinched him. His blood pressure rose. His left side fell asleep and his thinking slowed. Even his vision was distorted. Worst of all, the symptoms never subsided, so the management consultant took a medical leave. He was 30 years old.

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

Its terrifying and conflicting medical sagas, two of millions of COVID survivors with ongoing symptoms, reveal the still murky nature of the syndrome that has baffled doctors and caused pharmaceutical companies to freeze in their path, unknowingly where to direct your investments in treatment.

Patients say they feel trapped in the quicksand.

“The approach to caring for people with long COVID is so bad,” Hayden said. “I’ve been teaching my doctors!”

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

Samantha Laurey / The Chronicle

Recognizing the need to fight the problem more quickly, President Biden announced on April 5 a long-term National Research Action Plan on COVID. This is a public-private partnership that will be based on Recover, a $ 1.15 billion initiative by the National Institutes of Health to coordinate lengthy COVID research across the country, including UCSF and Stanford.

In the two years since patients and doctors identified long-term COVID, researchers around the world have scanned, looked at and looked at thousands of people, hoping to discover anything that could lead to a cure for persistent symptoms. ranging from exhaustion and brain fog to accelerated heartbeats. and loss of smell. It is estimated that about one-third of unvaccinated COVID survivors have persistent symptoms and about half of vaccinated patients.

Scientists are gradually finding out more about the syndrome, said Dr. Steven Deeks, lead researcher on the UCSF’s LIINC research study or Long-Term Impact of Coronavirus Infection. LIINC alone has published 18 articles, including a small new one, suggesting that COVID Paxlovid may relieve persistent symptoms.

Researchers point to three probable causes of 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 on itself.

These, in turn, wreak havoc in four main ways, Deeks told state lawmakers at a hearing in March. They cause neurological symptoms such as confusion, debilitating fatigue, cardiovascular problems and a unique condition called POTS (Postural Orthostatic Tachycardia Syndrome) where the heart speeds up when the patient stands up.

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