For COVID long-haulers, 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 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, 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 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.