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!”
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.
Many patients, such as Hayden and Gustafson, have overlapping symptoms. Virginia Sen. Tim Kaine, who has had COVID for a long time, says his nerves hit him “24-7,” as if his fingers were stuck forever in a glass of Alka-Seltzer.
But even diagnosing long-term COVID is tricky. There are no X-rays to detect it or blood tests to show what’s going on, Deeks told lawmakers. Without this, treatment remains elusive.
“I am knocking on the doors of all the pharmaceutical companies saying that you have done it obtained to get involved, ”he said. “They say, okay, well, we’re committed. But basically, how do we prove to the FDA that our drug works?
Dr. Larry Tsai, who leads the development of Genentech’s respiratory and allergic products, told The Chronicle that clinical trials to see if existing drugs can be reused for a long time COVID “are likely to begin soon “. But new drugs? Not yet, he said. These essays “expect a better scientific understanding of the underlying cause” and a clearer recognition of who would respond best.
Before Gustafson had mild COVID, he ran a few miles a day, walked, sailed, and played guitar. It’s a story that many long haulers tell: they were exceptionally healthy until they weren’t. Then they felt decades older than their years.
“My chest pain, 24 hours a day for seven months in a row, I literally felt like I had a heart attack at every moment of the day,” she said. “My heart felt like it was exploding in my chest.” However, his tests were normal.
Except for one: their cytokine levels, indicating high inflammation.
Gustafson’s doctors at Stanford prescribed steroids and other anti-inflammatory drugs. But it wasn’t until March, after trying low-dose Naltrexone, a drug used to block the effect of opioids, and colchicine, usually for gout, that he felt relieved.
Now, with a “65% improvement,” he has returned to work, although some days are still bad, he said. “I feel like it’s all a waiting game for everyone.”
It even took more than a year to agree on a long definition of COVID, but the World Health Organization finally offered one 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 an alternative diagnosis.” Long-term COVID affects daily functioning, may persist from the onset of COVID infection and fluctuates over time, the organization concluded after talking to researchers and patients.
One such patient was Lisa McCorkell of Oakland, who co-founded the Patient-Led Research Collaborative after having had COVID for a long time. It is one of several advocacy groups that meets monthly with the U.S. Centers for Disease Control and Prevention.
“I don’t think we would be that far off with long-term COVID if the HIV / AIDS movement had not advanced” in working with federal agencies, he said. “They knew that the people closest to the pain should be closer to the power.”
McCorkell nearly finished his master’s degree in public policy in March 2020 when he suffered classic symptoms of COVID: shortness of breath, body aches, and even swollen limbs called COVID toes. She later developed POTS, a fast heartbeat when standing, and other symptoms that have been more manageable since she was vaccinated. But, as with most infected people in the early days, evidence was scarce and she was never diagnosed.
“This is biting us again now,” he said, because research studies require participants to have a diagnosis of COVID, just like workers ’compensation. “Making these things conditional on having some kind of proof is something we’re fighting against.”
Long-term COVID treatment trials funded by the federal government include studies on how cannabis, MRI images, and even singing can help. So far, most of them are small.
Coronavirus Resources
Map of covid19: Trend data in the Bay Area and throughout California
Lastest news: Complete coverage of the coronavirus pandemic
“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 Stanford’s long COVID clinic.
Which again explains why patients feel so frustrated: “We are still very much in the process of trying to understand the causes of long COVID,” Geng said.
Like many patients, Hayden is impatient with the results. “People need help right now, not in six months or two years. It’s heartbreaking and unfair.”
Researchers with the UCSF’s LIINC study have collected a lot of data from Hayden, but it’s not a treatment.
“His case is pretty serious,” said Dr. Michael Peluso, a senior clinical researcher and co-principal investigator at LIINC, where many participants, such as Hayden, have “discomfort after the effort.”
It basically touches her. She and others compare her experience to the equally mysterious “myalgic encephalomyelitis” or chronic fatigue syndrome.
When he “crashes” every few weeks, he says, “I feel like I’m crawling. It’s hard to get up. It’s hard to walk around the room. And you don’t feel rested after sleeping.” night, “he said.” And there’s brain fog.
In the absence of medical treatment, Hayden and other longtime COVID patients turn to each other for remedies.
“We all get much better information from colleagues than from doctors right now,” said Hayden, who is a member of a large health maintenance organization.
He takes allergy pills day and night, hoping to reduce inflammation and help with “full autoimmunity.” Take fish oil and supplement with CoQ10 and NADH.
Beyond that, he is surprised that people have abandoned the masks.
“Don’t you understand?” he asked, addressing his message to the audience. “You could be disabled for life.”
Nanette Asimov is a writer for the San Francisco Chronicle. Email: [email protected] Twitter: @NanetteAsimov