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.
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.
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. 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 theAllison N. O’Donnell, deputy director for long covid at HHS, said she did not have “exact timing on when the position will be posted.
“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.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.
Even as treatment strategies evolve, patients are desperate to understand what the end of the public health emergency will mean for them. “There’s not a thing I can do for you,” she recalls him telling her. “No medicine. No magic bullet. No nothing.”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.“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.
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