NEWSWEEK.COM 31
COVID Long-Haulers:
Waiting for Relief
For the growing ranks of patients suffering
from lingering neurological effects of COVID-19,
the recent attention, and the prospect of
new research, are welcome developments.The answers can’t come soon enough.
Cassandra Hernande], a 37-year-old, reg-
istered nurse working in Methodist Hospital
in San Antonio, Te[as, came down with the
virus around the same time four coworkers
got sick last -une. After 0 days of COVID-19,
she tested negative. But she is still reeling
from its effects. Her legs often feel like they
are “on ɿre,” though she is not sure why.
She’s e[perienced sei]ure-like convulsions,
profound e[haustion and short-term memory
problems, and sometimes passes out. Some-
times it comes on so fast and strong, she can’t
remember how to brush her teeth or walk.
“I have times when I couldn’t remember
how to write. I didn’t know how to add. I didn’t
know how to subtract,” she says. “I have ɿve
degrees. To not be able to add or subtract
just blows my mind. I felt like a child.”
Though she has e[perienced some
progress, the symptoms often come in waves,
and she has had many setbacks. “My face
and lips still go numb,” she says. “My hair
falls out. I feel like someone has robbed
me of my life, of my career, of everything.”
“I’m still technically in rehab. But I’ve asked
them, how long is it going to take for me to get
better" At ɿrst they were saying si[ months to a
year, and now they’re just like, şWe don’t know’.”
Her e[perience is not unique. Dr. Allison
Navis, lead clinical neurologist at Mount Sinai
Hospital’s post-COVID-19 center and an
e[pert in neuro-infectious diseases, says the
vast majority of long-haul patients she is see-
ing e[perienced only mild symptoms, were not
hospitali]ed and are far younger than the pa-
tients you typically see on the news. Many are
dealing with signiɿcant neurological issues.
These include headaches, tingling numb-
ness and burning sensations throughout the
body, confusion, memory problems, difɿ-
culty focusing, profound e[haustion and anintolerance for physical activity, where some-
thing as simple as climbing the stairs can
result in di]]iness, heart palpitations and light
headedness. The severity varies widely. Some
people can only work limited hours, while oth-
ers are entirely incapacitated. Brain imaging
studies have not revealed any abnormalities.
There is no treatment for the underlying
condition. All Navis can do is treat the indi-
vidual symptoms.
Many of her patients, for instance, meet
the diagnostic criteria for Postural Ortho-
static Tachycardia syndrome or POTS, a
dysregulation of the autonomic nervous
system, that can contribute to “dysautono-
mia symptoms,” such as lightheadedness,
heart palpitations, heart racing, and fatigue.This is treated with hydration, salt intake
and compression stockings. She estimates
that about one third of the patients she sees
meet the diagnostic criteria for Chronic
Fatigue Syndrome. Many have head-
aches. Some who have trouble focusing or
directing attention have been prescribed
medication for Attention Deɿcit Disorder.
Some patients are improving, others are
not. “We wish we had more options, but we
really don’t,” says Navis. “It’s really just kind
of working things up, making sure we’re not
missing anything else. A lot of what we do
is just reassurance. Even if we don’t have an
answer, the normal test results are reassuring
and it’s a lot of just managing the symptoms.”
One of the biggest challenges is keeping
up people’s spirits. “It’s very frustrating for the
patients, understandably, that they don’t know
what’s going on and feel so horrible,” she says.
After working with CFS patients for years,
Dr. Avindra Nath, clinical director of the
National Institute of Neurological Disorders
and Stroke, also knows well how frustrat-
ing une[plained chronic illnesses can be.
“It’s very important to not take away hope
from people,” he says. “The person afʀicted
with the disease has a very different perspec-
tive on timescale than a scientist does.”MEDICINE