A BOUT WITH COVID-19 two years ago left Mindy Lym with such severe sensitivities to light and sound that she and her partner left their San Francisco home and moved to rural Washington, where there were fewer triggers. In the past two months, she has paid more than $7,500 out-of-pocket for medical care. Although she can afford it, she knows few people can do the same.

Stephen Mintz gets just $60 per week from disability, which he receives after the chronic fatigue from COVID-19 kept him from regular work. He spent all of his savings and borrowed money from family. Without more relief payments from the state, he doesn’t know how he’ll pay his bills.

COVID-19 sent Janine Loftis to the hospital in 2020. She relies on a caretaker after lingering symptoms like brain fog, pain and fatigue keep her from cooking or cleaning. But when Loftis’ caretaker took a month-long leave of absence, shortages ravaging the health care workforce made it impossible to find a replacement.

These are three out of countless stories of long COVID among Californians. Recent CDC surveys suggest 5.5 percent of California adults — roughly 1.5 million people — currently experience the ill-defined, mysterious and often debilitating collection of symptoms that make up long COVID. A majority of them, 82 percent, have some limits on their activity. While most of society rushes eagerly back to pre-pandemic life, these patients, known as “long haulers,” have been largely left behind by their communities, doctors and policymakers. 

“It’s a pandemic of loneliness and social isolation and rejection,” said Ibrahim Rashid, a long hauler and founder of Strong Haulers, a startup app designed to make chronic symptom management easier.

These patients, known as “long haulers,” have been largely left behind by their communities, doctors and policymakers.

California long haulers can face years-long wait times to get into specialized clinics. Oftentimes they have to fight for disability payments or to be taken seriously by doctors. Lawmakers, despite holding hearings on the issue last year, have not introduced any proposals this session to assist long haulers. A budget proposal to increase long COVID clinic capacity at University of California health centers failed last year, and it’s unlikely with an expected state budget deficit that anything new would make it off the ground now.

Former state Sen. Dr. Richard Pan, who co-chaired a special hearing on long COVID last year, told CalMatters in February ahead of the deadline to introduce new bills that he hoped “people are paying attention to this” because long COVID will put new stressors on the health care, mental health and disability systems.

The Senate Special Committee on Pandemic Emergency Response was not reinstated this year. A spokesperson for Sen. Josh Newman, a Democrat from Fullerton who chaired the committee last session, said there hasn’t been any conversation about long COVID since last year.

Patients at the forefront

Instead, the policy legwork has fallen on two people: Lisa McCorkell, co-founder of the Patient-Led Research Collective who has suffered from long COVID since March 2020, and Art Mirin, whose daughter has a similar post-viral condition called myalgic encephalomyelitis/chronic fatigue syndrome. Together, McCorkell and Mirin have drafted budget proposals, solicited letters of support from disability advocacy groups, and met with legislators and staffers. They’re doing the work that political power players pay lobbyists millions of dollars to organize — so far to no avail.

“One of the big issues with long COVID…is that the people who are the most motivated to do something about it have the least amount of energy and ability to cause a scene,” McCorkell said.

Despite struggling with postural orthostatic tachycardia syndrome, a blood circulation disorder that can cause fatigue and brain fog, as well as other disabling symptoms, McCorkell has testified before Congress on long COVID, conducted research and pushed for California to do more for the population.

She and Mirin wrote last year’s budget proposal for the state to fund research, training and treatment centers at UC medical campuses and other academic centers. Mirin said it has been challenging to find a champion for this issue.

“People will say they support one thing or another, but when it comes down to an official public request, other things have a way of coming into play,” Mirin said.

Although five UC medical campuses have long COVID clinics, demand far exceeds capacity, said Dr. Anne Foster, chief clinical strategy officer for UC Health Systems.

“There are just a lot of patients out there,” Foster said. UC Health supports McCorkell and Mirin’s proposal but new state funding isn’t available, she said.

Officials with the California Department of Public Health plan to create a new COVID-19 Control Branch to monitor variants and outbreaks and support long COVID research, said State Epidemiologist Dr. Erica Pan. The department is using some money from last year as well as seed money from the state’s $1.8 billion long-term COVID-19 preparedness plan to open the branch. However, proposed budget cuts make ongoing funding undertain.

“We are looking at that and trying to advocate for ongoing resources,” Pan said.

Without additional money from the state, Foster said UC Health has pivoted to developing a free continuing education training program for doctors on best practices to treat long COVID patients.

McCorkell and Mirin say the training modules aren’t perfect, but they’re an important resource for primary care doctors, especially considering most people in the state live too far from a specialized clinic to get help.

Many doctors haven’t heard of long COVID

Stephen Mintz of Fresno is one such patient living too far from specialized care.

Mintz avoided COVID-19 for more than two years, but in August he went to a bar to celebrate his 59th birthday. It’s there where he most likely contracted the virus. By September, Mintz found he didn’t have the physical or mental stamina to do much of anything. After two-and-a-half hours of activity, his limbs would get heavy and his thoughts would muddle.

“You could almost set a clock to it,” Mintz said. “Suddenly it would be very difficult to put one foot in front of the other.”

Stephen Mintz sits at the side of his bed in his apartment in Fresno on March 3, 2023. Mintz was diagnosed with COVID-19 in September and has had chronic fatigue since then. (Larry Valenzuela/CalMatters/CatchLight Local)

In January, Mintz was stacking chairs at a local bar where he works as a security guard. Within 10 minutes he got dizzy and couldn’t lift his arms anymore. It’s a common condition associated with long COVID called post-exertional malaise — pushing through the fatigue can worsen symptoms.

“I actually cried then. I’ve been depressed over this and frustrated,” Mintz said. “I couldn’t believe I’m so weak.”

Mintz went to his primary care doctor in Fresno for help. He said he thought he had long COVID and was met with skepticism.

“His first reaction was that he hadn’t really heard of it,” Mintz said.

On his disability paperwork, Mintz said the doctor wrote “general malaise and short-term amnesia” because he didn’t know how to diagnose Mintz and told him to call UC San Francisco, nearly 200 miles away, for advice.

“The doctor there said ‘Um, well, if you lived here you could be part of a research study,’” Mintz said.

“I’ve been depressed over this and frustrated. I couldn’t believe I’m so weak.”

Stephen Mintz, patient with long COVID

It’s a common experience among people with long COVID-19. Though the pandemic has thrust post-viral illnesses into the spotlight, most doctors still don’t have the experience to treat the collection of more than 200 symptoms that make up long COVID.

Each new variant of COVID-19 also changes which symptoms are most common, making it doubly difficult for the average primary care doctor to diagnose, said Dr. Nisha Viswanathan, a primary care physician at UCLA Health’s long COVID clinic. The “vague nature” of many symptoms like fatigue and insomnia also lead to misdiagnosis and frustration among patients.

“It’s really challenging,” Viswanathan said. “If you’re not seeing a certain volume of long COVID patients, it can be difficult to recognize when a patient may be having it versus not.”

Mindy’s story

COVID-19 first hit Mindy Lym, a 37-year-old San Francisco native, like a mild flu with a fever and congestion. But on day five of her illness she looked at a text from her girlfriend who was isolating in a separate room and couldn’t make sense of the words. It looked like gibberish.

“That really scared the shit out of me,” Lym said. “I knew it had gotten into my brain.”

“We moved because of my long COVID. Being in a city with city noises … was completely untenable.”

Mindy Lym, patient with long COVID

She has spent every day since then chasing after an elusive recovery. Like McCorkell, Lym developed postural orthostatic tachycardia syndrome and wears compression garments like stockings and a corset to improve blood circulation. She also has mast cell activation syndrome, which causes an immune response similar to a severe allergic reaction as well as chronic inflammation.

For three months, Lym, who formerly worked as a music teacher and theater performer in San Francisco, could barely walk and needed a full-time caretaker to dress and bathe. Even soft noises and dim lights caused her “unbearable pain.” When construction outside her house led to weeks of jackhammering, Lym developed PTSD.

“We moved because of my long COVID,” Lym said. “Being in a city with city noises…was completely untenable.”

Mindy Lym has been living with long COVID since the summer of 2022. (Celeste Noche/CalMatters)

In September 2022, before moving out of state to rural Washington, Lym called the Post-Acute COVID-19 Syndrome clinic at Stanford Health Care. The clinic scheduled an appointment for her in October 2023.

“The demand has been extremely high,” said Dr. Linda Geng, co-director of Stanford’s long COVID clinic. The clinic sees about 12 to 15 new patients each week and has an eight-month average wait time.

Yet even as patients like Mintz and Lym struggle to get into a specialized clinic, UCLA physician Viswanathan said she has heard from multiple colleagues at other facilities that are considering closing their long COVID care clinics or reducing hours. Health systems are strapped for cash and facing a dire workforce shortage, said Dr. Anil Keswani, chief medical officer at Scripps Health in San Diego.

“We have increased supply costs. We have increased pharmacy costs. We have increased labor costs,” Keswani said. “How do health care systems invest in programs like long COVID clinics, like hiring more clinicians? Health care organizations have been battered over the last few years, but I don’t see any government relief.”

Some of Mindy Lym’s medications and supplements living with long COVID. Lym has been living with long COVID since the summer of 2022. After months of bed rest, she is now living in Camas, Washington, with her girlfriend where her symptoms are improving but are still a day to day challenge. (Celeste Noche/CalMatters)

Nearly one third of the long COVID clinics in California told CalMatters they need more resources to expand capacity, increase awareness or train primary care doctors to recognize the signs.

“Ultimately, the real way we’re going to be able to expand or even keep these clinics functional…is going to probably be support at a state or federal level,” Viswanathan said.

Support also needs to come in the form of patient navigators and case workers for patients with long COVID, Viswanathan said.

Janine’s story

A patient navigator could help someone like Janine Loftis, who has battled for nearly two-and-a-half years to be seen by a long COVID specialist.

Loftis turned 73 in January, but physically, she feels much older. In November 2020, after laying in “the house for two weeks not knowing what to do,” Loftis called an ambulance. It was the middle of the night, she had COVID, and her oxygen level dropped. Family and caretakers couldn’t check on her for fear of infection. By the time Loftis was admitted to the hospital, she had viral and bacterial pneumonia and blood clots forming deep in her veins.

Loftis was already disabled from previous spinal injuries, but the persistent aftereffects of COVID-19 have floored her.

“It’s embarrassing how little I can do on my own,” Loftis said. “My body gives out on me. Things are just lost to my mind.”

Janine Loftis, 73, at her home in Elk Grove on April 26, 2023. Loftis suffers from long COVID; lingering symptoms from the original infection such as brain fog and chronic fatigue. (Rahul Lal/CalMatters)

The chronic fatigue and brain fog prevent her from going to in-person church services, and she recently gave her dog of nine years, Lily Grace, to an adoption agency after caring for her got too hard. When Loftis’ home caregiver took a leave of absence for four weeks, she couldn’t find a replacement. Long-standing workforce shortages intensified acutely during the pandemic, leading to “high demand and low options.” Without anyone to help her, Loftis “struggled really horribly” to manage daily tasks.

“I have a COVID test sitting out because I felt so bad yesterday. I thought, ‘Do I have it again?’” Loftis said.

Juggling doctors appointments and navigating the byzantine health insurance system is an added obstacle for Loftis.

“My head is spinning just trying to talk about it again,” she said. “I don’t know how lay people, especially disabled ones with a lot of distractions like pain or like me with brain fog, how they…understand it.”

“It’s embarrassing how little I can do on my own. My body gives out on me. Things are just lost to my mind.”

Janine Loftis, patient with long COVID

Two months ago, Loftis finally convinced her primary care doctor to refer her to the UC Davis long COVID clinic, but her paperwork is “lost in a pile of things that need authorization.”

“It takes everything just to keep up with anything,” Loftis said. “When things get ignored or I don’t know the process, I just have to wait for it to play out. I’m the middle man. I can’t do anything.”

UC Davis Health did not make anyone from its long COVID clinic available for an interview. When asked about clinic capacity, the media relations division said in an unattributed email the Post-COVID-19 Clinic has the ability to treat “an infinite number of patients.”

Hope… with some caveats

There is a chance for recovery. Anecdotally, long COVID specialists interviewed by CalMatters said even if patients don’t make a full recovery, most see significant improvement over time.

“You look a year or 18 months out and the majority of people have had improvement if not complete resolution,” said Dr. Caitlin McAuley, a primary care physician at the USC Keck COVID Recovery Clinic.

A large study out of Israel found that among patients with mild COVID-19 infections, most symptoms resolved within one year.

Other studies, however, paint a less rosy picture, with few patients reporting full recovery. One study on French patients found 85 percent still reported long COVID symptoms a year after onset.

On the plus side, Mintz, who has had long COVID for eight months, has slowly regained his energy over time. He can go five or six hours without crashing, compared to two hours in January.

Mindy Lym has been living with long COVID since the summer of 2022. Lym keeps a food diary to note her reactions to different foods. (Celeste Noche/CalMatters)

And Lym, who has had long COVID for nine months, has also seen a marked improvement. In February, she enrolled in a private long COVID research and treatment clinic. Together with her doctor, Lym discovered certain foods exacerbated her most severe symptoms. Now, she has an 18-page list of foods she can’t eat and takes a medley of antihistamines, blood thinners and supplements daily. Though Lym is still disabled, her sensory issues are 95 percent better and her energy has steadily improved.

“I feel like I have my personality back. My fatigue is no longer limiting how I express myself … which is amazing,” Lym said.

But Lym’s clinic isn’t covered by insurance, and costs $1,000 per month plus the cost of any tests the doctor orders.

“It’s not accessible,” Lym said. “I know there are so many people going through what I’m going through but don’t have the resources.”

This story originally appeared in CalMatters.