There are thousands of Americans who say they've been experiencing Covid-19 symptoms for weeks or months, often referred to as Covid-19 long-haulers, David Tuller reports for STAT News. These patients have reported experiencing extended bouts of coughing, trouble breathing, fatigue, neurological and psychological conditions, and other symptoms that have been linked to Covid-19, the disease caused by the novel coronavirus.

Meet the Covid-19 'long-haulers' whose symptoms won't seem to go away

But some of these patients face a unique "dilemma," according to Tuller: They don't have documentation proving they were ever infected with the virus. And as a result, many of those patients say that doctors have dismissed their symptoms, leaving them to manage their worsening conditions on their own.

Many Covid-19 long-haulers can't confirm they had the disease

Due to initially strict coronavirus testing guidelines and nationwide shortages of tests, testing supplies, and capacity to process the tests, some Americans who experienced symptoms of Covid-19 and had suspected cases of the disease were never tested to confirm whether they had in fact been infected with the novel coronavirus. And others, including Covid-19 long-hauler Emily Talkington, repeatedly tested negative for the virus despite showing symptoms of Covid-19—an occurrence that potentially could be explained by accuracy issues with coronavirus diagnostic tests.

Talkington, a veterinarian from California, told Tuller that she started experiencing Covid-19 symptoms in March. Talkington was tested for the coronavirus twice, and she received negative results both times. But four weeks later, Talkington still was experiencing exhaustion, joint pain, tachycardia, and other symptoms of Covid-19.

In April, Talkington sought care at a temporary urgent care center after she had coughed up blood and almost collapsed from fatigue. Talkington believed her prior coronavirus test results were inaccurate and she was experiencing long-term symptoms of Covid-19. However, once the PA at the urgent care center learned that Talkington had tested negative for the coronavirus, the PA was dismissive of Talkington's Covid-19 concerns, she said.

According to Talkington, the PA "refused to refer her to a cardiologist for her racing heartbeat" and "gave her pamphlets on anxiety and perimenopause," Tuller reports. The PA also told Talkington to avoid reading anything on social media about post-Covid syndrome—a term used to describe long-term Covid-19 symptoms, Tuller notes.

"[The PA] said, what you're reading is giving you ideas," Talkington told Tuller. "[The PA] also said it could be my hormones. I was mortified and humiliated. He didn't believe me. It was awful."

Eventually, Talkington contacted a Stanford Blood Center program seeking patients who had recovered from coronavirus infections to donate plasma. Talkington received a test to determine whether she had antibodies to the virus, which would indicate that she had previously been infected. The test came back positive, providing evidence that Talkington had, indeed, been infected with the coronavirus and had Covid-19, Tuller reports.

But many other Covid-19 long-haulers still lack evidence that they were infected with the virus are, according to Tuller. For instance, Tuller reports that a patient-led poll associated with the online Body Politic Covid-19 support group found that, of 640 people with lingering Covid-19 symptoms who were surveyed, just 23% had received a positive coronavirus test result, while about 50% had never been tested and 28% tested negative for the virus.

Anthony Komaroff, a professor of medicine at Harvard Medical School and a clinical epidemiologist, said the issue highlights the "much larger problem of totally inadequate" and sometimes inaccurate testing for the coronavirus in the United States.

According to Tuller, CDC has estimated that between 30 million and 60 million Americans likely have been infected with the coronavirus, but only about 5.7 million Americans have tested positive for the virus.

Lack of documentation leaves some patients to manage symptoms on their own

Tuller reports that some long-term Covid-19 patients who tested positive for the coronavirus have reported seeing doctors who were skeptical of their symptoms, and as Talkington's experience shows, navigating care for long-term Covid-19 symptoms can be even more difficult for patients who don't have evidence of a coronavirus infection.

Komaroff said the issue could be an aftereffect of misconceptions that arose during the early days of the coronavirus pandemic, when it was widely assumed that all Covid-19 patients would experience fever and pulmonary symptoms. As a result, some patients who were experiencing other symptoms were not tested for the virus—and, in some instances, those misconceptions continue to affect patient care, Tuller reports.

Daniel Griffin, chief of infectious diseases at ProHealth Care, said that, at the start of the pandemic, both providers and patients were unaware of how important documentation of a coronavirus infection could be for Covid-19 long-haulers. Griffin told Tuller that patients experiencing long-term Covid-19 symptoms who do not have documentation of a coronavirus infection often report that they had a hard time finding a provider who wasn't dismissive of their symptoms and concerns. And, unfortunately, that often means patients are having severe symptoms by the time they see Griffin, he said.

"By the time they reach me, they've been told their story is not believable," Griffin said. "They might have lost half their hair and can't go up a flight of stairs, but if they don't have proof of Covid, a lot of providers don't want to deal with them or will refer them to a psychiatrist."

And the experience can be psychologically taxing for long-hauler patients, many of whom experienced concerning symptoms that were dismissed by doctors for months, Tuller reports.

Talkington, for example, called her experience "emotional." She said she "sat down and cried for an hour" after receiving her positive coronavirus antibody test results.

Tasha Crabtree, a veterinary technician in Las Vegas, couldn't access a coronavirus test until one month after she began exhibiting symptoms of Covid-19, Tuller reports. That test came back negative, and an antibody test came back negative, as well. But Crabtree, who still experiences excessive sweating and heart-pounding, told Tuller that she's very sure she had Covid-19, although doctors often dismiss her concerns because she has no proof of a coronavirus infection.

"You're made to feel like you're crazy," she said. "You start to think, you know what? Maybe I am crazy, am I making this up?"

However, some patients have reported that their doctors eventually turned to Covid-19 to explain their odd symptoms, Tuller notes.

Mady Hornig, an epidemiologist and psychiatrist at Columbia University, said she had a cough and a fever for nearly two weeks in April. And now, she still feels weak and short of breath.

Hornig received a diagnostic test and an antibody for the novel coronavirus, and both came back negative. Still, Hornig said she believes her symptoms are due to Covid-19 and, after a lot of discussion, providers agree that Covid-19 is the most likely explanation.

But Hornig indicated that if she, a medical professional, faced pushback on her condition, it likely could be even more difficult for patients who don't have a medical background to receive care for long-term Covid-19 symptoms of they don't have proof of a coronavirus infection. "If one of my doctors could suggest to me that this post-Covid tachycardia likely reflects some deep-seated unconscious neurosis, then how will anyone without a medical background manage to be properly heard and guided through this?" she asked (Tuller, STAT News, 8/26).