Shelley Hayden of Sonoma has a case of long COVID so serious that her “brain is broken,” she said. The 54-year-old marketing coach asked not to be interrupted in conversation so she wouldn’t lose her train of thought.
[...]
Patients say they feel caught 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 wrestle the problem to the ground faster, President Biden announced on April 5 a
National Research Action Plan on long COVID. It’s a public and private collaboration that will build on
Recover, a $1.15 billion initiative from the National Institutes of Health to coordinate long COVID research at sites across the country, including UCSF and Stanford.
[...]
Scientists are gradually discovering more about the syndrome, said Dr. Steven Deeks, co-principal investigator with UCSF’s research study
LIINC, or Long-term Impact of Infection with Novel Coronavirus. LIINC alone has published
18 papers, including a small new one
suggesting the COVID drug Paxlovid can ease persistent symptoms.
Researchers point to three likely causes of long COVID: bits of virus 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 like confusion, debilitating fatigue, cardiovascular problems, and a unique condition called POTS — postural orthostatic tachycardia syndrome — where the heart races when the sufferer stands up.
[...]
“I knock on the doors of all the drug companies saying, you guys have got to get involved,” he said. “They say, OK, fine, we’re committed. But how are we gonna basically prove to the FDA that our drug works?’”
Dr. Larry Tsai, who heads Genentech’s respiratory and allergy product development, told The Chronicle that clinical trials to see if existing drugs can be repurposed for long COVID “are likely to begin soon.” But new drugs? Not yet, he said. Such trials “await better scientific understanding of the underlying cause” and clearer recognition of who would best respond to them.
[...]
Among the long COVID treatment trials funded by the federal government include studies of how cannabis, magnetic resonance imaging, and even singing might help. So far, most are small.
“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.
[...]
“Her case is pretty severe,” said Dr. Michael Peluso, clinical lead and co-principal investigator of LIINC, where many participants, like Hayden, have “post-exertional malaise.”
It basically knocks her flat. She and others compare their experience to the equally mysterious “myalgic encephalomyelitis,” or chronic fatigue syndrome.
When she “crashes” every few weeks, she says, “I feel like I’m crawling. It’s hard to stand up. Hard to walk across the room. And you don’t feel rested after sleep” because her joints hurt during the night, she said. And there’s brain fog. She’ll start a word — say, “couch” — and it cuts off as “cou.”
Absent any treatment from doctors, Hayden and other long COVID sufferers turn to each other for remedies.
[...]
Beyond that, she is astonished that people have abandoned masks.
“Don’t you understand?” she asked, directing her message to the public. “You could be disabled for life.”
Nanette Asimov is a San Francisco Chronicle staff writer. Email:
nasimov@sfchronicle.com Twitter:
@NanetteAsimov
