For COVID long-haulers, pandemic far from over

since January, when President Joe 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 LONGCOVID 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 postinfection 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, betterfunded 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 syntem drome, known as ME/ CFS.

“What we know from ME/CFS and other postviral 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 longhaulers, 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 LONGCOVID 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 Sysever 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.