Thousands of people disabled by long COVID seek answers

In the three years since Los Angeles County declared COVID-19 over as a public health emergencymask sales declined, unopened tests expired in their boxes, and people returned to school, work, and in-person social activities.

But for thousands of Los Angeles County residents living with the complex chronic illness known as long COVID, the emergency never ended. And as the virus continues to circulate, more and more people are forced to deal with a life-changing but often invisible disability, whose relative newness offers few answers for the future and few possibilities for support.

“You don’t just become disabled,” said Elle Seibert, 31, who has suffered debilitating fatigue and heart symptoms since 2020. “You realize how easily society as a whole and the people around you will abandon you when you can’t offer them things.”

Elle Seibert, 31, has been living with COVID for a long time.

(Christina House / Los Angeles Times)

Long COVID is a chronic infection-associated illness, a class of illnesses triggered or worsened by viral, bacterial, or parasitic infections. Symptoms usually affect multiple organs or systems of the body and cluster around fatigue, cardiovascular problems, cognitive problems and pain.

“What causes long COVID is an abnormal immune system response [plus] dysregulation of the nervous system,” said Dr. Caitlin McAuley, director of Keck Medicine of USC. COVID Recovery Clinicone of two dedicated clinics in the county (the other is at UCLA).

Researchers also found that long-term COVID patients are more than twice as likely as people without the condition of having SARS-CoV-2 virus particles lingering in their blood – remnants of the original infection that could cause ongoing inflammation.

Although the disease varies by patients’ age, gender, race, vaccination status, and previous health or activity levels, a few demographic patterns have emerged. Women, people of Hispanic origin, people with serious initial infections and people not vaccinated against the virus appear more likely than other groups to develop long COVID.

The severity of the initial illness does not perfectly predict the consequences: debilitating symptoms have appeared in people with mild initial infections. Patients arrive at a diagnosis once symptoms have persisted for at least three months and all other explanations have been ruled out.

Lawrence Totress, 51, was working full time and volunteering as his church’s office manager when he tested positive for COVID in July 2022.

For two weeks, he had the same fever, shortness of breath, dizziness and fatigue as his friends. But as her fever finally subsided, cognitive symptoms of frightening intensity descended.

Lawrence Totress, 51, in his Los Angeles apartment. “It’s not like we’re sitting around and trying to get money. It’s a very serious illness,” he said.

(Ariana Drehsler / For Time)

“I couldn’t find the words,” he said recently from his home in South Los Angeles. “I was having phone calls with my supervisor, with my insurance, and I was crying because I couldn’t even finish the conversation. » At one point, he couldn’t remember the name of the person he reported to for the past two years. He scrolled through his phone contacts until he saw “Supervisor” typed under a name.

A trip to the bathroom or the front door left him with no energy to return. He went through migraines and bouts of postural orthostatic tachycardia syndrome, or POTS, a common long-lasting COVID symptom that caused his heart rate to skyrocket when he stood up.

Through occupational therapy at Keck’s long COVID clinic, he learned skills that allowed him a semblance of independence: hydration, rest, careful management of his time and energy.

Where he once jumped from task to task, he now dedicates an entire day to a trip to the grocery store. On a bad day, he might not be able to get past the product before being hit with fatigue so bad he can’t remember why it’s there.

He can no longer work; the bills are still piling up. Like all the patients interviewed for this article, his request for long-term disability was denied, despite a thick stack of medical records.

“It’s not like we’re sitting around and trying to get money. It’s a very serious illness,” he said. “Take this seriously and let us have the resources.”

There is no reliable data on long COVID cases in the county, nor on the number of people disabled by the disease.

The county’s official tally for total confirmed COVID infections ended in mid-2023 to 3.5 million. Taking into account the advice of the World Health Organization estimate While 6% of infections result in long COVID, just the first two years of the pandemic could have yielded as many as 175,000 cases of long COVID, a number that only increased as the virus continued to circulate.

In 2023, 15.6% of people surveyed in a countywide health survey reported experiencing COVID symptoms for at least three months after testing positive. A county follow-up survey currently underway asks more specifically whether respondents have had long-term COVID symptoms in the past 12 months, said Barbara Ferrer, director of the Los Angeles County Department of Public Health. These results will be available later this year.

Ferrer compared the current state of public understanding to the early days of the HIV/AIDS epidemic. In both cases, she said, a new virus has created a large population of people living with a complex chronic illness with far-reaching consequences for their health, housing and economic security.

“COVID-19 has really had a profound impact in terms of long-lasting symptoms that affect all kinds of different parts of the body, at a much higher rate than we usually see with other viruses,” Ferrer said.

This month, the public health department formed a task force of doctors and patient advocates that, for 12 months, will study policies and services that could help long-term COVID patients, Ferrer said, such as a clearer path to disability benefits and better education for health care providers.

“We still hear stories from people who say, you know, my doctor ruled it out or misdiagnosed it, or told me to go home and wait,” Ferrer said.

Patient advocates have lobbied the county Board of Supervisors to establish a similar task force, without success so far.

Beth Nishida, 64, at Creekside Park in Walnut. She retired from special education administration due to lingering effects of an infection that occurred in 2022.

(Ariana Drehsler / For Time)

“The goal, in my opinion, should really be how to solve this problem, not just how to count it,” said Beth Nishida, 64, of Walnut, who retired from special education administration because of the lingering effects of a 2022 infection. [long COVID] is new, but it’s not as new as before. At some point you have to start learning things and implementing them.

The outlook at the federal level is bleak. Last year, the Trump administration farm the Office for Long COVID Research and Practice and canceled grants for long COVID research.

“The COVID-19 pandemic is over, and HHS will no longer waste billions of taxpayer dollars responding to a nonexistent pandemic that Americans gave up on years ago,” a Department of Health and Human Services spokesperson said. told Science magazine.

Yet new COVID infections produce new long-COVID patients. People who were healthy and active just months ago are still arriving at the USC clinic with life-altering cardiovascular and cognitive problems.

“There has been a societal movement to move past COVID as if it no longer exists — but it definitely does,” McAuley said. “If it’s not on people’s radar, it’ll never be solved. And people will go in and out of emergency rooms, and they’ll potentially have some degree of disability. [to] to the point where they just lose their jobs, and no one really cares.