Berrent suggested that COVID might come to be regarded not as a respiratory disease but as a neurological one. “I fear that there is a higher viral load involved with the Delta variant and it congregates in the nose and mouth,” she said. “What happens? Just using common sense, it goes up the nose, it knocks out the olfactory system, and what’s right next to it? The vagus nerve, which controls all of our automatic functioning. . . . We know that this virus crosses the blood-brain barrier”—a critical layer of immune defense that prevents microorganisms from infecting the central nervous system—“and we are seeing evidence of direct brain damage.”
The interviewer spoke up: “Now, I thought there was pretty clear evidence that we don’t know yet whether it’s crossing the blood-brain barrier.” (In fact, many infections begin in the mouth and nose without affecting the nervous system, and, although research has suggested that the spike protein may breach the protective barrier in mice, there is no conclusive evidence that the coronavirus infects the brain in humans.)
“We know,” Berrent responded.
Elsewhere in the program, Berrent took issue with the C.D.C.’s decision not to investigate breakthrough COVID cases that didn’t require hospitalization. “There is no such thing as a mild case of COVID,” she said, as she often does. “Let me explain what they mean by ‘mild.’ They mean encephalitis. They mean COVID pneumonia. They mean end-stage organ failure.”
The interviewer paused, a quizzical look on her face. “So you’re saying that end-stage organ failure is counted as mild?” she asked.
For a moment, Berrent hesitated. “It sure is,” she said.
Berrent’s advocacy is informed in part by a group of COVID survivors that the public, and even many medical professionals, never see. She hears from people who say that they are struggling with unusual, nonrespiratory symptoms, such as erectile dysfunction and chronic diarrhea. One Survivor Corps member is a young mother with a feeding tube and eleven rotten teeth.
Through Berrent, I met Nick Güthe, who became a close adviser to Survivor Corps earlier this summer. Güthe, an independent filmmaker in his early fifties, told me his wife’s story. In its tragic ambiguity, it is typical of many stories in the long-COVID movement.
In April, 2020, Heidi Ferrer, Güthe’s wife and a former writer for “Dawson’s Creek,” felt shooting pains in her toes. Then she developed stomach pains and diarrhea. Ferrer and Güthe got rapid COVID tests at a drive-through site, and they came back negative. (Rapid tests are less reliable than P.C.R. tests.) In the weeks that followed, Ferrer experienced palpitations, muscle pains, and a fatigue so profound that she had difficulty walking up stairs.
By the fall, Ferrer was convinced that she had long COVID. She searched for doctors specializing in the condition, but couldn’t find any. She visited acupuncturists and alternative-medicine practitioners, and started taking ivermectin—the horse dewormer that has since been shown not to help with COVID-19. By the spring, she’d developed dramatic, involuntary jerking movements. She felt an internal buzzing, and told Güthe that it was like her veins had champagne bubbles fizzing in them. Unable to sleep, Ferrer started taking enormous doses of Ambien, sometimes a pill every two hours. Because she’d never tested positive for the coronavirus, her doctor hesitated to refer her to a newly opened long-COVID clinic. She consulted a neurologist, who, Güthe told me, tried “to imply it was all in her head.” Ferrer had no documented history of mental illness, but she did have a strong family history of depression: both her father and her grandmother had died by suicide. She had struggled with alcoholism, but had been sober since 2017.
On May 22nd, Güthe went to pick up their thirteen-year-old son, who was at a friend’s house. On the way back, Güthe said, “I have to talk to you about your mom. I want to believe she’s going to get better. But I have to be honest: I don’t know how this is going to turn out.”
Back home, he and his son went upstairs, where they found Ferrer in the master bedroom, hanging by a drape from the four-poster bed. Güthe told his son to go to his room. He tried to ease Ferrer down, but couldn’t. He raced downstairs for scissors, and finally cut the drape.
When they reached the hospital, Ferrer’s heart was still beating, but it was clear that she wouldn’t recover. A doctor asked Güthe how long his wife had been depressed. “She’s not depressed,” Güthe said. “This is from her body breaking down from long-haul COVID.” The doctor asked Güthe what that was. “Just Google it,” he replied.
In June, Güthe submitted an obituary to Deadline, which went viral. “Heidi always said, ‘If something happens, let the world know what long-haul COVID has done to me,’ ” he said. Through Twitter, Güthe connected with Berrent, and learned that Ferrer had been a member of Survivor Corps. In recent months, he has joined Berrent at about a dozen events. He now fields Facebook messages from people around the world, who relate their struggles with long COVID and ask for help. Not infrequently, someone shares suicidal thoughts. “I walk someone off the ledge every week,” Güthe said. “I tell them, ‘Things are moving much faster than you realize. Hope is coming. Help is on the way. People are paying attention now.’ ”
Others, pointing out that Ferrer never tested positive for the virus, have questioned whether COVID is to blame for her death. Such uncertainty characterizes many cases of long COVID less extreme than Ferrer’s. Doctors rightly say that some of the symptoms attributed to long COVID can result from any number of conditions. Yet many patients—both with and without documented coronavirus infections—are convinced that their problems are enduring aftereffects of the virus.
Defining a new disease is a complex task, full of hazards. Some physicians believe that the condition’s severity and scope have been overblown. In a recent column for the health-news site STAT, Adam Gaffney, a critical-care physician, wrote that we need to “start thinking more critically—and speaking more cautiously—about long COVID,” arguing that the narrative being spun about the long-term effects of infection is “getting ahead of the evidence.” A recent op-ed in the Wall Street Journal by the psychiatrist Jeremy Devine suggested that many long-COVID symptoms may be “psychologically generated or caused by a physical illness unrelated to the prior infection.” Devine proposed that long COVID is “largely an invention of vocal patient activist groups.”
