Shelley Hayden’s long-term COVID illness from Sonoma was so serious that she said she had a “brain fracture.” The 54-year-old marketing coach asked not to interrupt the conversation so as not to lose his mind.
Tyler Gustafson of Berkeley recovered from COVID-19 in 2020 and felt like a heart attack last summer: a deep, aching pain in his chest. Her body itched. Her blood pressure was heard. His left side fainted and his thinking slowed. Even his vision was distorted. Worse still, the management consultant took medical leave because the symptoms never subsided. He was 30 years old.
Mysteriously, Gustafson began to recover. But Hayden still suffers from “accidents” that make him mentally and physically exhausted for days or weeks.
Their dreadful, contradictory medical tales – two of the millions of COVID survivors with persistent symptoms – revealed the still gloomy nature of the syndrome, surprising doctors and driving drug companies into the lurch, not knowing where to direct their medical investments.
Patients say they feel like they have fallen into the sand.
“Caring for people with chronic COVID is very bad,” Hayden said. “I’ve been teaching doctors!”
Shelley Hayden walks around her lab Theo and her property in Sonoma.
Samantha Lori / ChronicleRecognizing the need to address the problem as soon as possible, President Biden announced on April 5 a long-running National Research Action Plan on COVID. It is a public-private partnership based on the restoration of the National Institutes of Health’s $ 1.15 billion initiative to coordinate long-term COVID research in all regions of the country, including UCSF and Stanford.
In the two years since patients and doctors diagnosed chronic COVID, researchers around the world have scanned, stitched and examined thousands of people in the hope of curing persistent symptoms ranging from fatigue and brain fog to heart palpitations. and odor loss. They believe that about one-third of unvaccinated COVID survivors suffer from long-term symptoms, and about half of vaccinated patients.
Scientists are gradually finding out more about the syndrome, Dr. said. Stephen Dix, lead researcher at UCSF’s LIINC study, or the long-term effects of roman coronavirus infection. LIINC has published only 18 documents, including a small new document showing that Paxlovid COVID can relieve persistent symptoms.
Researchers have identified three possible causes of chronic COVID: lice in the body, persistent inflammation caused by the coronavirus, and spontaneous activation of the body’s immune system.
That, in turn, leads to destruction in four main ways, Dix told state lawmakers in a March hearing. They cause neurological symptoms such as confusion, debilitating fatigue, cardiovascular problems, and a unique condition called POTS – postural orthostatic tachycardia syndrome – that occurs where the heart beats when the victim gets up.
Many patients, such as Hayden and Gustafson, have recurring symptoms. Virginia you. Tim Kane, a long-time COVID sufferer, says his nerves are itching “24-7” as if his fingers were stuck in Alka-Selzer’s glass forever.
However, long-term diagnosis of COVID is also difficult. There is no X-rays or blood tests to prove it, Dix told lawmakers. Without it, treatment is impossible.
“I knock on the doors of all pharmaceutical companies, and you have them received to participate, ”he said. “Okay, okay, they say we agree. But how do we prove to the FDA that our medicine works? ‘
Dr. Larry Tsai, who led Genentech’s development of respiratory and allergy products, told The Chronicle that clinical trials “may begin soon” to find out if existing drugs could be reused for long-term use of COVID. But new drugs? Not yet, he said. Such tests require “a better understanding of the underlying cause” and a clearer understanding of who is best at answering them.
Before Gustafson suffered a mild COVID, he ran several miles every day, hiking, surfing, and playing the guitar. This is the story of many long-distance truckers: They were exceptionally healthy until they were in good health. Then they felt decades older.
“My chest pain – 24/7 for seven months – literally felt like my heart was pounding every moment of every day,” she said. “My heart seemed to explode from my chest.” But his tests were normal.
Except for one: the level of cytokines indicates its high inflammation.
Gustafson’s doctors at Stanford prescribed steroids and other anti-inflammatory drugs. But until March, it was relieved when they saw the use of low doses of naltrexone and colchicine, commonly used against gout, to block the effects of opioids.
Now with a “65% improvement,” he’s back to work, but some days are still bad, he said. “I feel like I’m expecting it all.”
Shelley Hayden uses an oximeter to check the oxygen saturation in the blood. He used to walk, but now he can’t walk the distance to COVID.
Samantha Lori / ChronicleIt took more than a year to agree to a long-term definition of COVID, but the World Health Organization recommended it 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, COVID can persist from the onset of infection and changes over time, the organization concluded after consultation with researchers and patients.
One of those patients was Lisa McCorkell of Auckland, who co-founded a patient-led study after receiving COVID for a long time. It is one of several advocacy groups that meet monthly with the U.S. Centers for Disease Control and Prevention.
“I don’t think we would have a long-term COVID if the HIV / AIDS movement didn’t work with federal agencies,” he said. “They knew that the people closest to the disease should be the closest to power.”
When McCorkell was about to work with his master of public policy in March 2020, he suffered from classic COVID symptoms: shortness of breath, body aches, and even swollen feet called COVID toes. He later developed heartburn and other symptoms when he was in POTS, after vaccination. However, like most people in the early days, the tests were few and they were never diagnosed.
“It’s biting us back,” he said, as the study requires participants to be diagnosed with COVID as well as workers ’compensation. “Any kind of testing of these things is something we’re struggling with.”
Long-running federal-funded trials of COVID treatment include cannabis, magnetic resonance imaging, and even research on how singing can help. So far, most are small.
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“This is a really interesting study area. But we need to do well-designed and thorough research, “said Dr. Lisa Geng, co-director of Stanford’s Long COVID Clinic.
“We’re still trying to understand the causes of COVID for a long time,” Geng said, returning to why these patients are so dissatisfied.
Like many patients, Hayden is looking forward to the results. “People need help right now – not in six months or two years. This is heartbreaking and unjust. ”
Researchers with the UCSF LIINC study collected a lot of data from Hayden, but this is not a treatment.
“His condition is very serious,” the doctor said. Michael Peluso, clinical director and chief researcher at LIINC, said many participants, such as Hayden, have “post-workout pain”.
It basically hits his apartment. He and others compare their experience to the equally mysterious “myalgic encephalomyelitis” or chronic fatigue syndrome.
Every week, when there was an “accident,” he said, “I feel like I’m crawling. It’s hard to get up. It’s hard to walk around the room. And you can’t rest after sleep.” He said his joints hurt at night. The word begins – say “sofa” and it will be cut to “cou”.
Because there is no treatment from doctors, Hayden and other long-term patients with COVID treat each other.
Shelley Hayden takes a variety of vitamins and supplements to combat post-COVID symptoms.
Samantha Lori / ChronicleHayden, a member of the World Health Organization, said: “We all get better information from our peers now than from doctors.”
She takes allergy pills day and night, hoping they will reduce inflammation and help the “whole autoimmune” thing. It contains fish oil and CoQ10 and NADH supplements.
He was also surprised that people left masks.
“Don’t you understand?” He asked, addressing the crowd. “You could be disabled for life.”
Nanette Asimov is a San Francisco Chronicle staff writer. Email: nasimov@sfchronicle.com Twitter: @NanetteAsimov