For long COVID patients, the pandemic is far over. The U.S. public health emergency expires today, and many fear that their struggle – to be recognized and treated within the nation’s fragmented health care system – is only beginning.

When it comes to finding expert guidance and treatment for the complex tangle of disorders and illnesses, “COVID is [no doctor’s] full-time job,” said long COVID patient Liza Fisher. “Nobody’s doing this full-time to give patients the kind of care they need — it’s very complex and individualized.”

Fisher now suffers migraines and tremors and must undergo speech therapy and breath work, yet she views herself as lucky. An international flight attendant and part-time yoga instructor before the pandemic began, she initially became sick with COVID in June 2020. Fisher was more savvy than most when it came to navigating the labyrinthine system of physicians, referrals and specialists, being the daughter of health care workers.

WATCH: People living with long COVID explain how the disease changed their lives

She said she was among the first patients to be seen at a post-COVID care center in San Antonio, Texas, that opened in summer 2020. Most of her treatments were off-label and her heath care management has amounted to “a lot of trial and error,” said Fisher, who now receives disability benefits. Eventually, she received combined treatment for respiratory, gastrointestinal and neurological issues.

But here’s how she’s lucky: New patients must now wait more than six months to have an initial appointment at the same facility, and Fisher said, “Most people are really struggling with the wait times.”

Similar clinics that have popped up around the nation offer a hub of care where pulmonologists, cardiologists, neurologists and more specialists examine the complex nature of long COVID. But “post-COVID care centers are not all built equally,” said patient and activist Diana Güthe, who founded the grassroots patient advocacy organization called Survivor Corps. “Anyone can hang up a shingle and call themselves a post-COVID care center.” And many have found the focus is more on research than on treating them in the here and now.

About three out of 10 people who have ever had COVID-19 said they developed long COVID symptoms, according to a KFF analysis of January data from the Centers for Disease Control and Prevention’s Household Pulse Survey. Many say they feel adrift in the health care system. Patients like Karyn Bishof feel like they “face medical gaslighting” when they are told that the brain fog, fatigue, neurological disorders and difficulty breathing and functioning are “just anxiety,” she said.

Bishof became sick with COVID in March 2020, and later on developed an abnormally high heart rate, migraines and fibromyalgia, along with other multi-system disorders. Once she no longer tested positive for COVID, Bishof said, “I had to fight a lot harder to be taken seriously and get testing” for her illnesses tied to long COVID. The very patients who feel dizzy rising to walk across their bedroom often are the same people who must advocate for themselves, convincing multiple health care providers that they are sick and need treatment.

Earlier this month, the World Health Organization declared the virus “no longer constitutes a public health emergency of international concern” and that the global community should “transition to long-term management of the COVID-19 pandemic.” But even as life seems to move on, the nation has a long way to go to figure out what that looks like, including how to identify people with long COVID and get them connected with the care they need.

What’s taking so long?

In early 2021, the National Institutes of Health announced plans to study long COVID as part of the $1 billion RECOVER initiative. Patients desperate to be finally understood and treated were thrilled, Güthe said. After seeing how Operation WARP Speed produced COVID vaccines with historic efficiency, long COVID patients felt relief might finally be within reach.

“We now ask the patient, medical, and scientific communities to come together to help us understand the long-term effects of SARS-CoV-2 infection, and how we may be able to prevent and treat these effects moving forward,” Dr. Francis Collins, then NIH director, wrote.

The realities of scientific research soon dulled those hopes for quick action. To solve a problem, you first have to collect data that helps you understand the scope and scale of what you’re dealing with. Hundreds of researchers wanted to identify “the spectrum of recovery from SARS-CoV-2 infection” across populations, how many people endured long COVID, what “underlying biological cause” may lead to worse outcomes and if COVID infection itself led to a spillover effect of illnesses.

Dozens of clinics popped up in 33 states for that purpose, and so far, more than 12,000 people have participated in these clinics.

Yet many patients languish on waitlists due to the outsized demand. For some, when their date arrived, sometimes after months of waiting, their illness combined with systemic issues, such as lack of reliable transportation, child care or accommodations, made keeping the appointment a struggle. Even if they did make it, staff often handed patients questionnaires about their health history and symptoms, submitted blood work, had their vitals checked and were then sent on their way. Many felt betrayed by this process, said Ryan Prior, a fellow at the Century Foundation and long COVID patient who wrote “The Long Haul” about the effects on the health care system.

“Patients expect for there to be medicines” at these care centers, Prior said. “That’s really a basic concept.”

Desperate for relief and feeling ignored by the medical community, patients have turned to Facebook communities or sought naturopathic treatment, regimens typically given to people with chronic fatigue and other non-evidence-based options.

Health care providers are “overwhelmed” by the process, lack of guidance and feelings of guilt and inadequacy because they “can’t take care of these people,” said Dr. Clifford Rosen, who directs clinical and translational research at Tufts University. Rosen, who has worked directly with patients as part of the RECOVER initiative, observed a “huge disconnect between research and patient care.”

“We’re doing the research, but you know what our people tell us? ‘Why aren’t you taking care of us?’” Rosen said.

The path to person-centered long COVID care

Many long COVID patients who talked to the PBS NewsHour get angry when people say the pandemic is over, especially when their lives have been upended by their infection’s complicated aftereffects and indefinite duration. Now, with the end of the COVID public health emergency, they feel the window of opportunity (and political will to fund more research to understand what’s happening to them) has closed.

Doctors also say there is more work to do. Dr. Payal Patel, an infectious disease physician at Intermountain Health in Salt Lake City, Utah, said she is concerned for patients who already had chronic conditions before the pandemic, then became infected with COVID and developed a long-term, poorly understood new illness.

“It’s going to be harder and harder to understand what’s going on and find ways to make it better,” Patel said.

In a May 9 editorial published in the New England Journal of Medicine, Rosen and fellow physician Dr. Janko Ž. Nikolich said the government should prioritize care delivery over research and asked that Congress fund the Health Resources and Services Administration “to competitively select centers of excellence in long Covid care” by building off the network of clinics and long COVID support that were established as part of the RECOVER initiative.

“Over and above this research effort, the country needs additional structures that can provide the capacity for clinicians, patients, caregivers, advocacy groups, employers, and government officials to learn about, adapt, and implement interventions, therapeutics, and other best practices to combat long Covid,” they wrote, concluding: “It’s about time.”

In April, President Joe Biden’s administration promoted its work so far on long COVID care, a year after he had signed a presidential memorandum to establish a national and cross-agency research action plan to grapple with long COVID. Federal researchers are now studying new models of “comprehensive, coordinated, person-centered care” to better understand how to help long COVID patients more effectively.

The Veterans Health Administration has become a place of health care innovation for long COVID patients. Because the VA uses centralized data from 23 long COVID facilities within its network, it can track patient symptoms, treatment and outcomes more seamlessly than the fragmented health care system most Americans must rely upon. (The Department of Health and Human Services did not respond to the PBS NewsHour’s request for comment for this story.)

After years of treating long COVID patients, Rosen said he is convinced that “we need best practices. We need quality control.”

Through it all, millions of people are waiting for help and have spent months, if not years, watching their lives as they knew them become consumed by illness. Without those best practices, some are going rogue with quack remedies found on the internet. Others might be on the cutting edge of identifying something real and helpful. They are experimenting not because they want to, but because they feel they have no choice.

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