The
phenomenon, involving thousands of patients with symptoms lasting
months at a time, complicates the Trump administration’s argument that
most illness is mild so the U.S. can quickly reopen the economy. These
frightening long-term cases aren’t captured in official statistics that
show that the vast majority of younger adults survive the virus.
While lingering lung issues might be expected given the
nature of the virus, some of the most common and surprising problems
involve the nervous system. For Americans with these symptoms, there are
few answers available on why they surface, how long they’ll last and
what permanent problems they may cause. Neurologists are only just
starting to study the trend.
“A very large number of the symptoms fall within the brain and nervous system,” according to Natalie Lambert, an Indiana University School of Medicine researcher who surveyed more than 1,567 members of an online support group for people with longer-term symptoms in a push to map out their effects.
Adrian Owen,
a neuroscientist at Western University in Canada, has been “completely
inundated” with emails from people who have found themselves with
cognitive problems months after their initial infection, he said in an
interview.
“It is becoming completely obvious that many of them are
suffering from neurological deficits,” Owen said. “Even if this only
affects 10% of people, that can be a massive societal and economic
burden a year from now.”
For Eli Musser, a 42-year-old copywriter
in Astoria, Queens, the first weeks of Covid-19 were nowhere near as bad
as what came later. In late March, Musser came down with a low fever
and fatigue for a few days followed by a recurring cough that lasted
several weeks.
“And then I got walloped,” he said in an interview.
For months, Musser was so debilitated doing more than sitting
on the couch and resting was too much. He’s had tremors and shaking in
his arms, dizziness, muscle weakness so severe he sometimes had trouble
dressing, panic attacks and depression. One terrifying day in May, he
couldn’t move his legs. In June, he experienced intermittent fits of
seizure-like sweating and shaking.
Now, five months after his
initial symptoms, he’s still on medical leave and only recently received
a diagnosis for his neurological symptoms. Meanwhile, Musser’s fiancĂ©e,
who also fell ill in March but recovered in about 10 days, spends hours
each day caring for him.
“A good guess is it won’t last forever,
it’ll get better with time,” Musser said. “But also, how much time? How
much better? What can I reasonably expect?”
To get a handle on questions like this, the neuroscientist Owen is working with University of Toronto
researchers to survey 50,000 coronavirus patients with lingering
neurological symptoms to determine who might be most at risk and what
the long-term effects are.
They’re using a series of self-reported
questionnaires and brain games done online. Other studies, looking at
symptoms more broadly in fewer people and with more detail, are just
beginning elsewhere as well.
Survivor Corps
Many patients have been sharing their experiences in a Facebook group called “Survivor Corps” that today counts more than 96,000 members.
Diana Berrent founded the group after contracting Covid-19 in
March. Since then, she’s partnered with Lambert to survey its members.
The symptom list they gathered was pages long, including difficulty
concentrating or focusing, anxiety, memory problems, heart palpitations,
blurry vision and neuropathy in feet and hands.
With researchers just starting to study Covid-19’s long-term consequences, reliable numbers are hard to come by. A recent federal study
found that about 35% of people who tested positive for Covid-19 were
still experiencing symptoms two to three weeks later, including many
young adults.
While patients 50 and older had the highest risk of
long-lasting problems, more than a quarter of those under age 35 had
continuing symptoms, including many who had no previous health problems.
Italian Study
Meanwhile, a survey of 143 patients
who had been hospitalized for Covid-19 in Italy found that two months
later only 12.6% were completely symptom-free, and more than half said
they still had 3 or more ongoing symptoms.
There’s no doubt that coronavirus infection can cause nerve complications. One early study from Wuhan, China found that 36% of patients had neurologic symptoms ranging from headache to impaired consciousness.
Since
then, researchers have reported a variety of strange neurologic
syndromes, ranging from Miller Fisher syndrome, a nerve disease that can
paralyze eye muscles, to acute disseminated encephalomyelitis, a
nerve-lining inflammation that can resemble multiple sclerosis flareups,
to autoimmune encephalitis, and inflammation of the brain’s temporal
lobes, which can cause confusion and hallucinations.
But with case reports just emerging, it’s been hard to prove cause and effect.
Even
when people clear the virus and test negative, they “can feel out of
sorts for weeks and weeks,” almost similar to chronic fatigue syndrome,
said Anthony Fauci, director of the National Institute of Allergy and
Infectious Diseases, during a Facebook live interview on July 16th. But
it may take a year or more to understand whether the virus produces
truly long-lasting complications, he said.
Also see: Covid malaise poses economic drag long after virus abates
There
are logical reasons why people who were hospitalized could have
residual neurologic effects lasting for months. These patients may have
been so sick that organ failure limited oxygen flow to the brain, said Igor Koralnik, who is chief of neuro-infectious disease at Northwestern Medicine
and leads its neurology-focused Covid clinic. Blood clots in the brain
or widespread inflammation could also impact brain function, he said.
But the neurological symptoms now being seen in people who
had milder cases of Covid-19 are more mysterious. Even the loss of smell
that’s been a high-profile symptom of Covid-19 is considered
neurologic, likely caused by dysfunction of olfactory nerves or nerve
support cells, Koralnik said.
It’s possible, for instance, that
small amounts of the virus still remain in outer reaches of the body,
hiding out and continuing to wreak havoc. There’s precedent for
continuing symptoms with other viruses, including the coronaviruses SARS
and Middle East Respiratory Syndrome. Lingering virus has also been
posed as an explanation in those settings.
So far, though, there’s not strong evidence that Covid-19 infects the brain.
A
more likely scenario is that the body’s immune system continues to
fire, even after the virus has been dispatched, according to Dipa Jayaseelan,
a consulting neurologist at University College London Hospitals, who
has studied neurological complications of Covid-19. In that case, she
said, numerous antibodies and immune cells activated by the virus could
go awry in subtle ways.
‘Into Overdrive’
“It
isn’t the virus itself, but it’s the body’s reaction to the virus,”
Jayaseelan said. “The body goes into overdrive” in fighting Covid-19 and
may continue to overreact even after the virus is upended.
Allison
Navis, a specialist in neuro-infectious diseases at the Icahn School of
Medicine at Mount Sinai in New York, has seen about 50 long-haulers in
the last month. She believes there isn’t one common cause, but rather a
variety of different explanations. “It’s a big mystery,” she said.
“Everyone’s commenting that they’re starting to see this.”
An immune reaction may have caused Musser’s dizziness and vertigo.
After
a video consultation this month, Northwestern’s Koralnik diagnosed him
with Covid-related inflammation of his inner ear nerves and prescribed a
motion sickness drug along with specialized physical therapy. It was
“truly relieving” to find out that he had something treatable, Musser
said in an email.
Covid-19 patients who continue to grapple with symptoms
aren’t alone. Some survivors of SARS and Middle East Respiratory
Syndrome reported symptoms like fatigue and depression for years
afterward.
Ebola, Zika
Ebola survivors
often suffer from everything from headaches to joint pain to eye
problems long after they recovered from the disease, studies have found.
And Zika virus outbreaks have been linked to an higher incidence of
Guillain-Barre syndrome, a rare autoimmune disorder where antibodies
attack the nerves, sometimes leading to paralysis.
And while
long-term brain and lung damage are key concerns with Covid-19, there is
also a growing realization that the virus may cause subtle damage to
other organs, including heart inflammation.
Tracking the cause of the neurological issues could take a while,
given the difficulty of linking far-ranging immune effects to the virus.
During the AIDS epidemic, a surge of patients coming in with dementia
kick-started the field’s focus on infectious disease. But it took years
after HIV was discovered for the concept of HIV-related dementia to
become firmly established in the medical community.
At the
National Institute of Neurological Disorders and Stroke, neurologist
Avindra Nath said he’s received about 200 emails from patients reporting
long-lasting neurological complications, including “brain fog,” burning
sensations in the hands and feet, headaches and sleeping problems.
Two Small Studies
He’s
starting two small studies to look at the neurological complications in
detail, and plans to bring in dozens patients for batteries of tests to
figure out what might be going on. He suspects some of the burning
sensations reported in patients could be an atypical form of
Guillain-Barre syndrome or a peripheral neuropathy.
One study will focus on Covid-19 patients whose symptoms are
similar to a disease called myalgic encephalomyelitis, a mysterious
virus-linked illness better known as chronic fatigue syndrome.
“The
effects on the brain are under-recognized at the moment,” Nath said.
Finding out what is going on “is all we are thinking about right now.
This is the number one top priority.”
For some long-haul patients, exhaustive testing has turned up
specific abnormalities. Rachelle McCready, a 57-year-old critical care
nurse educator in London, Ontario, was hospitalized for eight days in
mid-April after coming down with the coronavirus.
‘Hit by a Truck’
She
never needed a ventilator or other extraordinary measures. Still, for
weeks after she got out of the hospital, she was so exhausted and out of
breath she spent most of the day in bed, too tired to do much more than
make coffee or do the laundry.
“It feels like you have been hit
by a truck, the truck then reversed and hit you again, and you are
recovering from that,” says McCready. “I never would have thought it
would still be impacting my life here at month five.”
Even after
she recovered enough to return to work on a part-time basis in June, she
noticed subtle neurological symptoms including trouble finding words
and learning new procedures. After an echocardiogram, a heart nuclear
medicine scan, a chest x-ray, and other tests came back negative,
doctors finally ordered a lung CT scan in early July.
It found
subtle damage to the airway walls in her lungs, a condition linked to
lung infections and often found in cystic fibrosis patients. Doctors
connected it with the coronavirus and, since then, her doctors
prescribed oral steroids and asthma inhalers that have reduced her
symptoms significantly, she said.
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