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

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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 resolve the issue more quickly, President Biden announced on April 5 a Long COVID National Research Action Plan. This is a public-private collaboration that will be based on Retrieve, 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 the UCSF research study. LIINC, or Long-term impact of infection with the new coronavirus. Only LIINC has published 18 items, including a new one suggesting 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. to 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.

Many patients, like Hayden and Gustafson, have overlapping symptoms. Virginia Sen. Tim Kaine, a long-time COVID sufferer, says his nerves are tingling “24/7” as if his fingers were forever stuck in a glass of Alka-Seltzer.

But even diagnosing long COVID is tricky. There are no X-rays to detect it and no blood tests to prove what is happening, Deeks told lawmakers. Without it, treatment remains elusive.

“I knock on the doors of all the pharmaceutical companies saying, you have obtained get involved,” he said. “They say, OK, fine, we’re engaged. But how are we going to prove to the FDA that our drug works? »

Dr. Larry Tsai, who leads Genentech’s respiratory and allergy product development, told The Chronicle that clinical trials to see if existing drugs can be repurposed for long COVID “will likely start soon.” But new drugs? Not yet, he said. Such trials “wait for a better scientific understanding of the underlying cause” and a clearer recognition of who would best respond to it.

Before Gustafson caught mild COVID, he ran a few miles a day, hiked, surfed and played guitar. It’s a story many long-haulers tell: they were exceptionally healthy until they weren’t. Then they felt decades older than their years.

“My chest pain – 24/7 for seven months straight – literally felt like I was having a heart attack every moment of the day,” he said. “My heart felt like it was going to explode out of my chest.” Still, his tests were normal.

Except one: his cytokine levels, indicating high inflammation.

Gustafson’s doctors at Stanford prescribed steroids and other anti-inflammatories. But it wasn’t until March, after trying low-dose Meltrexon, a drug used to block the effect of opioids, and colchicine, usually for gout, that he felt relief.

Now, with “65% improvement”, he is back to work, although some days are still bad, he said. “I feel like everything is a waiting game for everyone.”

Shelley Hayden uses an oximeter to check her blood oxygen saturation level.  She used to go hiking, but she wouldn't be able to walk as far as before she had COVID.

Shelley Hayden uses an oximeter to check her blood oxygen saturation level. She used to go hiking, but she wouldn’t be able to walk as far as before she had COVID.

Samantha Laurey/The Chronicle

Even agreeing on a definition of long COVID took more than a year, but the World Health Organization has finally offered a in October. The syndrome occurs “usually three months after the onset of COVID-19”, with symptoms lasting at least two months that “cannot be explained by another diagnosis”. Long COVID affects daily functioning, can persist from the onset of COVID infection, and fluctuates over time, the organization concluded after speaking with researchers and patients.

One of those patients was Lisa McCorkell of Oakland, who co-founded the patient-led research collaboration after contracting a lengthy COVID. It’s one of many advocacy groups that meet monthly with the US Centers for Disease Control and Prevention.

“I don’t think we would be this far with the long COVID if the HIV/AIDS movement hadn’t made inroads” working with federal agencies, she said. “They knew that the people closest to pain should be closest to power.”

McCorkell had nearly completed her master’s degree in public policy in March 2020 when she was struck down with classic COVID symptoms: shortness of breath, body aches and even swollen extremities known as COVID toes. She later developed POTS, pounding heart on standing, and other symptoms that have felt more manageable since being vaccinated. But, as with most people infected in the early days, testing was sparse and she was never diagnosed.

“It’s coming back to bite us now,” she said, as research studies require participants to have a COVID diagnosis, as does workers’ compensation. “Making these things depend on some sort of test is something we fight against.”

Among the long COVID treatment trials federally funded studies include studies of how cannabis, magnetic resonance imaging and even singing could help. So far, most are small.

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“It’s a really exciting area of ​​research. However, we need to conduct well-designed and rigorous studies,” said Dr. Lisa Geng, co-director of the long-running Stanford COVID Clinic.

Which goes back to why patients feel so frustrated: “We are still trying to figure out the causes of the long COVID,” Geng said.

Like many sufferers, Hayden is eager for results. “People need help right now – not six months from now or two years from now. It’s heartbreaking and unfair.”

Researchers at UCSF’s LIINC study collected a lot of data from Hayden, but it’s not a treatment.

“His case is quite severe,” said Dr. Michael Peluso, clinical lead and co-principal investigator of LIINC, where many participants, like Hayden, suffer from “post-exertional malaise.”

It basically hits her flat. She and others liken their experience to the equally mysterious “myalgic encephalomyelitis,” or chronic fatigue syndrome.

When she “breaks down” every few weeks, she says, “I feel like I’m crawling. It’s hard to get up. Difficult to cross the room. And you don’t feel rested after sleeping” because his joints hurt at night, she said. And there’s brain fog. She’ll start a word — say, “sofa” — and it’ll end with “neck.”

In the absence of any treatment from doctors, Hayden and other long-suffering COVID sufferers are looking to each other for cures.

Shelley Hayden takes a variety of vitamins and supplements to help combat post-COVID symptoms.

Shelley Hayden takes a variety of vitamins and supplements to help combat post-COVID symptoms.

Samantha Laurey/The Chronicle

“We’re all getting much better information from our peers than from doctors right now,” said Hayden, who is a member of a large health maintenance organization.

She takes allergy pills day and night, hoping they will reduce inflammation and help with “overall autoimmunity”. She takes fish oil and CoQ10 and NADH supplements.

Beyond that, she is surprised that people have given up on masks.

“You do not understand ?” she asked, addressing her message to the audience. “You could be disabled for life.”

Nanette Asimov is an editor for the San Francisco Chronicle. Email: [email protected]: @NanetteAsimov

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