For COVID long-haulers, the pandemic is far from over

Ever since January, when President Biden announced plans for a springtime end to the coronavirus public health emergency, Frank Ziegler has been wrestling with what that would mean for COVID long-haulers like him.

“The president was telling the U.S. to just move on. The problem is that for however many million of us, we can’t just move on,” said the Nashville attorney, who has endured cognitive impairments since coming down with COVID-19 more than two years ago.

“I have heard of long-COVID clinics closing and dropping patients,” Ziegler said. “At some point, the doctors that are researching it may just give up. Where does that leave all of us?”

The end of the public health emergency in May represented a pivotal moment.

Patient advocates installed hundreds of red cots on the National Mall that proclaimed “Still here, still sick.” Physicians from the American Academy of Physical Medicine and Rehabilitation called for renewed focus on the ongoing personal and societal impact of post-infection conditions. The long-COVID peer-support group Body Politic tweeted that it would be closing down its original Slack channel system at the end of May and transitioning to an existing, better-funded app. And Survivor Corps, a long-hauler advocacy group and vocal critic of the pace of government research, announced it had shut down as philanthropic funding waned.

“Saddest Friday news dump ever,” tweeted Survivor Corps founder Diana Berrent Güthe, who called for volunteer moderators to run the group’s 200,000-strong Facebook group.

Physicians and patients alike say the threat is clear: that long COVID could lose the funding that had raised hopes of solving the mysteries behind a slew of apparently post-viral conditions. And fears have crept in that long-haulers will face a fate akin to that of people with chronic fatigue syndrome - marginalized and misunderstood, with a lack of medical evidence to explain or treat their symptoms and little impetus for researchers to dedicate their careers to such confounding cases.

“Those fears are very well-grounded,” said Emily Taylor, vice president for advocacy and engagement at Solve M.E., a nonprofit for people with myalgic encephalomyelitis/chronic fatigue syndrome, known as ME/CFS.

“What we know from ME/CFS and other post-viral diseases is that the recovery rate drops after about four years,” Taylor said.

Taylor helped organize an April meeting in Washington where long-haulers joined with Solve M.E. to lobby lawmakers to devote dollars to addressing a range of post-viral conditions through the Care for Long Covid Act.

That show of unity comes as divisions have emerged among long-haulers, some of whom are less ready than others to accept that the rest of the country has doffed its masks and is moving on.

“What navigating the pandemic has come down to is individual choices,” said Maria Town, president of the American Association of People With Disabilities, who noted that hundreds of people are still dying from COVID every day while others become disabled. “With the end of the public health emergency, it is going to be even harder for people to make informed decisions.”

“On Twitter, people are turning on each other,” said James C. Jackson, a psychologist at Vanderbilt University Medical Center in Nashville and expert on the impact of illnesses on cognitive functioning.

“Unfortunately, I think it’s probably part of the natural progression,” Jackson said. “The main driver is frustration.”

The loss of some pandemic-era benefits has heightened frustrations for Americans with long-COVID symptoms, whose numbers range between 7 million and 23 million, according to government estimates.

Free coronavirus tests are no longer guaranteed from private insurers with the ending of the public health emergency. Rules for reporting test results have been relaxed, making it harder to tell where the coronavirus is prevalent. Tens of millions of Americans will have to determine whether they remain eligible for Medicaid benefits. And despite the Biden administration’s decision to extend access to controlled substances through telehealth for six months, many patients feel vulnerable to further changes in a policy they have come to rely on.

They are already navigating disconcerting changes in their doctors’ offices.

“In addition to feeling left behind on a conceptual level, many patients are feeling unsafe in accessing medical care. They don’t know who to trust to be masked,” said David F. Putrino, director of rehabilitation innovation at Mount Sinai Health System in New York. The end of the health emergency will result in “a lot more cases,” he warned.

For people with long COVID, the specter of reinfection looms - and it’s not clear how dangerous reinfection is. One support group, the Patient-Led Research Collaborative for long COVID, recently released a survey to assess the impact, aiming to fill that vacuum in public health knowledge.

Michelle Haddad, a neuropsychologist who runs a long-COVID clinic at Emory Rehabilitation Hospital in Atlanta, said the risk of reinfection has heightened anxiety for some patients, exacerbating PTSD. One patient, an emergency room physician who developed severe long-COVID symptoms after contracting COVID in 2020, got a second case in 2022.

“He was back at square one,” Haddad said. “It’s so disheartening.”

A study of almost 10,000 adults released Thursday as part of the National Institutes of Health’s RECOVER project identified the most common of the 200-plus symptoms associated with long COVID and found that reinfections were linked with higher frequency and greater severity of long-COVID symptoms.

The $1.15 billion NIH project has come under fire for focusing on sweeping observational studies that track participants’ health information rather than emphasizing clinical trials, which might identify treatments more quickly. Its studies have enrolled 16,000 participants to provide data that should help capture the causes of the condition and potentially identify measurable biomarkers for long COVID and other post-viral illnesses in blood or other bodily fluids or tissues.

The first potential treatment it will study is the antiviral drug Paxlovid, already used by some patients when they first fall ill with COVID. The estimated completion date of that drug study is early 2024.

“Those are timelines associated with incremental discovery, not disruptive innovation,” said Putrino, who has turned to alternative funding sources. “We need treatments in two or three years. We’re not seeing the methodological changes consistent with that time window.”

But Walter J. Koroshetz, one of the RECOVER co-chairs, argues that the systematic approach is designed to avoid the problems that have bedeviled research into ME/CFS, post-Lyme disease and post-mononucleosis.

“There probably isn’t going to be a quick solution,” said Koroshetz, who pointed to 10 preprints and 17 peer-reviewed publications in the National Library of Medicine’s PubMed database resulting from RECOVER research, even as he acknowledged that the NIH program is not communicating its progress well enough.

“We do have a problem because people don’t understand what’s been happening,” Koroshetz said. Piles of academic papers covering counters in his office reflect the research going on across the country.

But the overall government response strikes many as sluggish. In late May, the Department of Health and Human Services sent out an email announcing it would soon be posting the job of director for the proposed Office of Long COVID Research and Practice. That office was first called for in August 2022 in the National Research Action Plan on Long COVID.

Allison N. O’Donnell, deputy director for long COVID at HHS, said she did not have “exact timing on when the position will be posted.”

This spring, HHS published a fact sheet showing the progress the administration has made with its whole-of-government response to long COVID, including promoting patient-centered care models and resources for providers.

Some frustration with the pace of research may stem from unrealistic expectations about the speed of science that were sparked by the unprecedented development and rollout of coronavirus vaccines.

“‘If we can move heaven and earth with vaccines,’ people are asking, ‘why can’t we develop a treatment for long COVID?’” Jackson said.

The slow pace of research and risk of low returns also prove discouraging for scientists, according to Harlan Krumholz, a Yale School of Medicine cardiologist who transferred his expertise in clinical research to long COVID early in the pandemic.

“It’s not an area that researchers are rushing to be part of,” Krumholz said. Unlike cancer or neurology research, fields that can deliver stunning breakthroughs for ambitious young scientists, post-viral studies are moving slowly.

“People have been in the wilderness for decades with Lyme and ME/CFS,” Krumholz said.

Meanwhile, misconceptions are settling in, said Ziegler, the Nashville attorney, including that long COVID amounts to little more than “brain fog.” Those two words fail to capture the cognitive deficits, including slower processing speeds that he has experienced.

At the same time, worries are mounting about the impact of even mild infections on brain functions, with two recent studies out of Germany suggesting persistent neuro-inflammation.

“The critical challenge,” writes Eric Topol, director of the Scripps Research Translational Institute, “is how to arrest the process and alleviate the neurologic symptoms that people with long COVID are suffering.”

Many physicians, including Jackson, are employing the tools of cognitive rehabilitation for long-COVID patients, helping them develop an array of compensatory skills to offset deficits, much as if they had suffered a traumatic brain injury.

Even as treatment strategies evolve, patients are desperate to understand what the end of the public health emergency will mean for them.

“The lack of clear guidance leaves people in despair,” said Francesca Beaudoin, director of the Long Covid Initiative at Brown University, who said she had been receiving emails and calls from patients.

That sense of despair is familiar to Jimmie Lou DeBakey, who tested positive for the coronavirus in January, beginning her long-COVID journey just as the rest of the country was putting the pandemic into the past. In February, overwhelmed by lassitude, she went to the emergency room, where a doctor looked her in the eye.

“There’s not a thing I can do for you,” she recalls him telling her. “No medicine. No magic bullet. No nothing.”

DeBakey, 71, said she sobbed all the way home.

More than three years into the pandemic, DeBakey is shocked not to have found a centralized repository for information, even at the Johns Hopkins Bloomberg School of Public Health, where she works in development.

And she remains frustrated in her efforts to put her own experience - or body parts - to good use.

“I am a wealth of blood and experience and they can take anything they want from me, but I can’t find anyone who wants me,” DeBakey said. “I’ve either had it too long or not long enough or my symptoms are wrong.”

Those problems are all too familiar to Liza Fisher, who developed severe tremors and other disabling symptoms after being infected with the coronavirus in June 2020, launching her on a months-long quest for treatment that has evolved into long-COVID activism.

Fisher traveled from Texas to Washington in April to meet with members of Solve M.E. and help make the case for long-COVID legislation. The week of hybrid events highlighted participants’ new worries, particularly regarding the end of the public health emergency, which became the focus of a webinar Fisher helped organize.

There was a sense of “doom and gloom” among the dozens of participants, Fisher said, even as she emphasized that this is a moment to take stock. The question now, Fisher said, is how to maximize the special status long COVID gained during the pandemic to advance research and treatment for all post-viral illnesses.

“There’s only so much money and time,” Fisher said. “We need to merge and push for incremental progress.”