In the three years since Los Angeles County declared an end to COVID-19 as a public health emergency, mask sales have dwindled, unopened tests have expired in their boxes and people have returned to in-person school, work and socializing.

But for thousands of L.A. County residents living with the complex, chronic condition known as long COVID, the emergency has never ended. And as the virus continues to circulate, more people are being forced to reckon with a life-altering yet often invisible disability whose relative newness offers few answers for the future and few avenues for support.

“You’re not just becoming disabled,” said Elle Seibert, 31, who has dealt with debilitating fatigue and cardiac symptoms since 2020. “You’re realizing how easily society at large and people in your life will abandon you when you cannot offer them things.”

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

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

Researchers have also found that long COVID patients are more than twice as likely as people without the condition to have particles of the SARS-CoV-2 virus lingering in their blood — remnants of original infection that could be causing ongoing inflammation.

Though the condition strikes across age, gender, race, vaccination status and patients’ previous levels of health or activity, a few demographic patterns have emerged. Women, people of Hispanic origin, people with severe initial infections and people who have not been vaccinated against the virus appear more likely than other groups to develop long COVID.

Severity of the initial disease can’t perfectly predict the aftermath: debilitating symptoms have set in for 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 busy 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 that his friends experienced. But while his fever eventually lifted, frighteningly intense cognitive symptoms descended.

Lawrence Totress, 51, at his apartment in Los Angeles. “It’s not like we’re twiddling our thumbs and trying to get some money. This is a very serious condition,” he said.

(Ariana Drehsler / For The Times)

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“I could not find words,” he said recently from his home in South Los Angeles. “I would have phone calls with my supervisor, with my insurance, and I would just cry because I couldn’t even finish the conversation.” At one point, he could not recall the name of the person he’d reported to for the last two years. He scrolled through his phone contacts until he saw “Supervisor” typed below a name.

A trip to the bathroom or the front door left him without energy to return. He cycled through migraines and bouts of postural orthostatic tachycardia syndrome, or POTS, a common long COVID symptom that sent his heart rate skyrocketing when he stood up.

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

Where he once bounced from task to task, he now clears a whole day for a grocery store outing. On a bad day, he may not make it past the produce before he’s hit with fatigue so intense he can’t recall why he’s there.

He can no longer work; bills are still piling up. Like every patient interviewed for this story, his application for long-term disability was denied, despite a thick stack of medical records.

“It’s not like we’re twiddling our thumbs and trying to get some money. This is a very serious condition,” he said. “Take it as it being serious, and allow us to have the resources.”

There is no reliable data for county long COVID cases, nor for the number of people disabled by the condition.

The official county count for total confirmed COVID infections ended in mid-2023 at 3.5 million. Given the World Health Organization’s estimate that 6% of infections result in long COVID, just the first two years of the pandemic may have yielded up to 175,000 long COVID cases, a number that has only grown as the virus has continued to circulate.

In 2023, 15.6% of respondents to a countywide health survey said they had experienced COVID symptoms for at least three months after testing positive. A follow-up county survey currently underway asks more precisely whether respondents have had long COVID symptoms within the last 12 months, said Barbara Ferrer, director of the L.A. County Department of Public Health. Those 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 created a large population of people living with a complex, chronic condition with far-reaching implications for their health, housing and economic security.

“COVID-19 really has 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 from other viruses,” Ferrer said.

This month, the public health department formed a physician and patient advocate working group that for 12 months will study policies and services that could help long COVID patients, Ferrer said, such as a clearer pathway to disability payments and better education for healthcare providers.

“We still hear stories about people who are saying, you know, my physician dismissed it or misdiagnosed it, or told me to just go home and wait,” Ferrer said.

Patient advocates have lobbied the county Board of Supervisors to establish a similar task force, thus far unsuccessfully.

Beth Nishida, 64, at Creekside Park in Walnut. She retired from special education administration due to the ongoing effects of a 2022 infection.

(Ariana Drehsler / For The Times)

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“The goal really, in my opinion, should be how do we fix it, not just how do we count it,” said Beth Nishida, 64, of Walnut, who retired from special education administration due to the ongoing effects of a 2022 infection. “I know [long COVID] is new, but it’s not as new as it was. At some point, we have to start learning things and implementing them.”

The outlook at the federal level is grim. Last year, the Trump administration closed 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 moved on from years ago,” a Department of Health and Human Services spokesperson told the magazine Science.

Yet new COVID infections are producing new long COVID patients. People who were healthy and active just a few months ago are still arriving at USC’s clinic with cardiovascular and cognitive problems that have upended their lives.

“There has been a societal move to go past COVID as if it’s not around anymore — but it definitely is,” McAuley said. “If it’s not on people’s radar, it’s never going to be addressed. And people will bounce in and out of the ER, and they will potentially have a degree of disability [to] the point where they just lose their job, and no one really is addressing it.”

The Trump administration on Friday moved to roll back Biden-era limits on emissions of ethylene oxide, a cancer-causing chemical often used in the sterilization of medical devices.

The Environmental Protection Agency said repealing the rules, which fall under the National Emission Standards for Hazardous Air Pollutants, would “safeguard the supply of essential medical equipment” — saving approximately $630 million for companies over 20 years. California is home to about a dozen such facilities.

The government said the pollution is an inevitable part of protecting people from “lethal or significantly debilitating infections that would result without properly sterilized medical equipment,” arguing that the technology does not readily exist to meet the more stringent rules.

“The Trump EPA is committed to ensuring life-saving medical devices remain available for the critical care of America’s children, elderly, and all patients without unnecessary exposure to communities,” EPA Administrator Lee Zeldin said in a statement.

Supporters of the Biden rule reject that argument and say companies could have complied using existing technology and that the public was not at risk of losing sterilized equipment.

An estimated 50% of sterile medical devices in the U.S. are treated with ethylene oxide, or EtO, particularly those that can’t be cleaned using steam or radiation. The colorless gas is also used to make chemicals found in products such as antifreeze, detergents, plastics and adhesives.

EtO poses health risks. Short-term exposure by inhalation can cause headaches, dizziness, nausea, fatigue respiratory irritation and other adverse health effects, according to the federal Agency for Toxic Substances and Disease Registry.

Longer-term exposure increases the risk of cancers of the white blood cells, such as non-Hodgkin’s lymphoma, as well as breast cancer. A now-deleted page from the EPA’s website stated, “EtO is a human carcinogen. It causes cancer in humans.”

Friday’s proposal specifically targets updated rules for EtO emissions that were passed by the Biden administration in 2024 following pressure from environmental justice groups, particularly those in Louisiana’s heavily industrialized “Cancer Alley.” The change sought to reduce the amount of EtO released from commercial sterilizers by 90% and lessen the hazards for nearby communities.

The tighter rules were in part based on EPA’s own scientific study that found it to be 60 times more carcinogenic than previously thought, which the agency now says should be reassessed.

If finalized, the plan would give facilities a choice between installing continuous real-time monitoring systems for EtO emissions or complying with modified pollution control requirements at facilities that emit more than 10 tons a year, the EPA said.

The proposal follows other moves by the Trump administration to rescind regulations it says are burdensome and costly for industries, such as those governing emissions from coal power plants. Last month, the EPA repealed the endangerment finding, which affirmed the dangers of greenhouse gas emissions and underpinned the agency’s ability to regulate those emissions from vehicles.

The action around ethylene oxide would affect about 90 commercial sterilization facilities owned and operated by approximately 50 companies. Three California companies applied for and received presidential exemptions for their EtO emissions in July.

They are located in Ontario and Vernon and operated by the company Sterigenics, which provides industrial sterilization technology for medical devices and other commercial products.

In January, a coalition of environmental and community groups challenged the EtO exemptions in federal court. The lawsuit from the Southern Environmental Law Center and the Natural Resources Defense Council argues that technology exists for facilities to comply with the tighter Biden-era standards without raising costs, and many facilities are already using it.

“EPA’s 2024 rule was an important and overdue step to reduce toxic ethylene oxide pollution and protect communities,” said Irena Como, senior attorney at the Southern Environmental Law Center, in a statement Friday. “Repealing this rule that is proven to significantly lower pollution exposure and cancer risks will subject even more people who work, live, and send their children to schools located near these facilities to harm that is entirely preventable.”

Sterilization and chemical industry groups support the plan.

“The EPA rule concerning ethylene oxide use in commercial sterilizers threatens to severely restrict access to vital medical products nationwide,” the American Chemistry Council said in a statement. “We commend the EPA for their commitment to reevaluating these policies.”

The EPA will hold a 45-day comment period about the proposal after it is published in the federal register. A final decision is expected sometime this year.

Researchers say the H5N1 bird flu outbreak in California elephant seals has spread to other marine mammals, including a sea otter and sea lion.

However, wildlife officials are cautiously optimistic the outbreak will remain contained. It has so far only been detected on beaches in San Mateo County, although testing is being conducted along the coastline.

The strain the animals have contains a mutation allowing it to more easily transmit between mammals. It is also a different variation than the ones found in dairy cows and commercial poultry. This one is Eurasian in origin, first seen in 2022. It has been detected in birds that fly along the Pacific Flyway, and is responsible for a mass mortality event in 2023 in northern fur seals on an island in eastern Russia, said Christine Johnson, director of UC Davis’ Center for Pandemic Insights, during a press conference Thursday morning.

Johnson said researchers think this is the first detection of the A3 variation of the virus on the Pacific Coast and therefore likely a new introduction into North America, she said.

In late February, a team of researchers from UC Davis, UC Santa Cruz, the California Department of Fish and Wildlife and the Marine Mammal Center announced they had found the virus in seven dead elephant seal pups collected from the beach at Año Nuevo State Park. That number is now 16, but Johnson said likely more will be confirmed in the weeks to come.

“This count reflects only the animals that have gone through sampling and confirmatory testing in multiple labs,” she said. “We know there are more animals with signs of infection that we have sampled that are being tested across the different laboratory systems.”

She said no other otters have been found, but a “handful” of California sea lions are “in the queue.” This kind of spillover, she said, is not unusual.

“Outbreaks affect a wide range of birds and mammals, and these animals all share the near shore ecosystem,” she said, although it’s “especially tragic” when infections affect less common species in the southern sea otter.

Patrick Robinson, the Año Nuevo reserve director, and a marine biologist at UC Santa Cruz, said 47 elephant seals on the mainland have died since the outbreak began, and the wildlife team is finding two new symptomatic and two dead animals every day.

Symptoms of bird flu in mammals include tremors, convulsions, seizures and muscle weakness.

He said it is normal for some individuals to die of natural causes, so testing is critical. And he said the percentage of animals that have died in the Año Nuevo rookery is relatively small: Only about 5% of weaned pups and 6% of adult males have died. Still, in the case of pups, that’s four times higher than last year’s death rates. And he said, the death of large males is “basically nonexistent in most males.”

He said 80% of the adult females had departed by the time the outbreak began, and nearly all of them are now gone. No adult females have died, and none have been observed with symptoms.

“The outbreak is not over, and we’re not really sure what’s going to happen in the future,” he said. “I remain hopeful about this thing right now.”

In late 2022, the H5N1 bird flu virus decimated southern elephant seal populations in South America and several sub-Antarctic Islands. At some colonies in Argentina, 97% of pups died, while on South Georgia Island, researchers reported a 47% decline in breeding females between 2022 and 2024. Researchers believe tens of thousands of animals died.

More than 30,000 sea lions in Peru and Chile died between 2022 and 2024. In Argentina, roughly 1,300 sea lions and fur seals perished.

At the time, researchers were not sure why northern Pacific populations were not infected, but suspected previous or milder strains of the virus conferred some immunity.

The virus is better known in the U.S. for sweeping through dairy herds, where it infected dozens of dairy workers, millions of cows and thousands of wild, feral and domestic mammals. It’s also been found in wild birds and killed millions of commercial chickens, geese and ducks.

Two Americans have died from the virus since 2024, and 71 have been infected. The vast majority of infected people were dairy or commercial poultry workers. One death was that of a Louisiana man who had underlying conditions and was believed to have been exposed via backyard poultry or wild birds.