A dilemma for ‘long-haulers’: Many can’t prove they ever had Covid-19

By David Tuller, STAT News, Aug 26, 2020.

As the coronavirus pandemic rolls on, an unknown number of seemingly recovered
patients are experiencing what is being called post-Covid syndrome — weeks or
months of profound fatigue, fevers, problems with concentration and memory, dizzy
spells, hair loss, and many other troubling symptoms. Among these “long-haulers,”
as they have become known, a significant number face a very specific challenge:
convincing others they had Covid-19 in the first place.

Because of widespread supply shortages and overwhelmed medical providers, many
who sought viral testing in the first months of the pandemic were refused for not
meeting strict criteria. Others decided on their own to self-quarantine. Some, like
wildlife veterinarian Emily Talkington, received negative results from local testing
sites despite clinical signs of the disease.

In late March, Talkington came down with what she assumed was Covid-19 and
decided she could weather it out at home. Four weeks and two negative coronavirus
tests later, she was still suffering from exhaustion, burning joint pain, tachycardia,
and other symptoms.

Talkington, who lives near Santa Cruz, Calif., did not trust the negative results. She
knew the tests could be unreliable if administered too long after the initial infection.

In late April, she sought treatment at a temporary urgent care center after coughing
up blood and almost collapsing from weakness.

A physician assistant dismissed her concerns once he learned she had tested
negative for coronavirus and was not having breathing difficulties, recalled
Talkington. He refused to refer her to a cardiologist for her racing heartbeat, gave
her pamphlets on anxiety and perimenopause, and advised her to ignore social
media posts about post-Covid syndrome, she said.

“He said, what you’re reading is giving you ideas,” said Talkington. “He also said it
could be my hormones. I was mortified and humiliated. He didn’t believe me. It was

Finally, after contacting a Stanford Blood Center program seeking donations of
plasma from recovered patients, Talkington took an antibody test — and it was
positive, indicating that she had previously been infected with the coronavirus. “It
was very emotional to finally have validation, I sat down and cried for an hour,” said
Talkington. The positive antibody test also cleared the way for her to get a cardiology
referral, she said.

Talkington’s dilemma is being replicated all across the country. Although tests for
antibodies — which show evidence of an immune response to the infection after the
fact — are now widely available, they are known to be of varying accuracy. Negative
antibody tests, like negative viral tests, are not considered conclusive.

Some people who believe they had Covid-19 might instead have had a cold or the flu
or some other illness, but even patients who had positive tests showing they had
active coronavirus infections report skepticism from doctors about their chronic
symptoms. Those without such laboratory confirmation can face much greater
obstacles, said Daniel Griffin, chief of infectious diseases at ProHealth Care, a
medical system with multiple facilities in and near New York City. These patients
routinely report difficulty finding a doctor who takes their complaints seriously, he

“By the time they reach me, they’ve been told their story is not believable,” said
Griffin. “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.”

Given the situation in the early months, said Griffin, patients who did not require
hospitalization were often clinically diagnosed based on reported symptoms and
exposures to known or possible cases. It was not clear at the time how important it
would be to have that viral test documentation later on, he said.

In May, a patient-led research team associated with the Body Politic Covid-19 online
support group released a survey of 640 people experiencing lingering symptoms.
Only 23% had received a positive coronavirus test, almost half had not been tested at
all, and 28% had tested negative.

It is too early to know how many people will ultimately have post-Covid symptoms
that last for longer than a few months, whether or not they have evidence of
infection. But this much is clear: Many or most people who were infected haven’t
been tested. The Centers for Disease Control and Prevention recently estimated that
30 million to 60 million Americans have likely already been infected with the
coronavirus, compared to the 5.7 million that have tested positive. Patients with mild
as well as severe cases of Covid-19 have experienced these persistent complaints.

Anthony Komaroff, a professor of medicine at Harvard Medical School and a clinical
epidemiologist, cites the country’s bungled pandemic response as a major reason
why so many people without a positive viral test could have post-Covid syndrome. “I
see it as part of the much larger problem of totally inadequate testing for Covid,” he

Early misconceptions about the disease also played a role. Komaroff said many
doctors, himself included, assumed every Covid-19 patient would experience fever
and pulmonary symptoms. As a result, he said, patients with mainly neurological
symptoms and other atypical presentations were not thought to have the illness and
were not generally tested.

Tasha Crabtree, a veterinary technician in Las Vegas, had a bout of diarrhea, a mild
sore throat, and an intermittent cough in mid-March. She didn’t think much of it or
associate it with Covid-19 until she woke up a week later gasping for breath. By the

time she was able to obtain a viral test, it was almost a month after her initial
symptoms — and it was negative. An antibody test was also negative.

Crabtree has continued to experience frequent heart-pounding, intense sweating,
and other symptoms. Although she is “200% sure” she had Covid-19, she
acknowledged harboring a bit of “positive-test envy” toward fellow patients. Not
having that proof of viral infection to offer skeptical clinicians takes an emotional
toll, she said.

“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?”

Mady Hornig, a Columbia University epidemiologist and psychiatrist who is herself
pursuing research into post-Covid phenomena, had a cough, almost two weeks of
fever, and other symptoms in April. Four months later, she can work for only a few
hours a day, not 10 or 12 as in the past, and is frequently short of breath.

Because she had negative viral and antibody tests, some of her own longtime health
care providers questioned whether she could have had Covid-19.

“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
said. After much discussion, she added, her clinicians have come around and now
agree that coronavirus is the best explanation.

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