According to government data,
more than 100 million people in
the United States have had
covid.
For about 15% who have had the
virus, it's meant prolonged
symptoms and long covid.
Physicians and researchers are
still struggling to understand a
lot of things about the
condition.
Our digital health reporter has
written a lot about long covid.
One thing they have had trouble
with is defining it.
There was a study that tries to
step towards definitions.
>> Researchers in Boston
surveyed thousands of patients
and asked them, what are your
symptoms?
What they found was echoing what
people are saying about long
covid.
They whittle them down through
infection history, statistical
modeling into symptoms they say
form the hallmark of long covid.
Things like brain fog,
dizziness.
Post-exertion malaise.
If you get up to walk across the
room it wipes you out.
Things people used to do without
thinking about, now they are
exhausted.
It points to how
transformational this disease is
and we are just beginning to
understand it.
Richard schuurs -- researchers
are calling it an attempt to
form a common language.
John: Any link between covid and
vaccination status?
>> They took different survey
responses and broke them into
four different clusters.
Looking at types of symptoms and
severity.
People who tend to have the
worst symptoms were those who
did not have two vaccine doses
and had been infected with covid
multiple times.
That combination is rough for
people who end up with long
covid.
John: Some experts have
reservations.
>> One of the big concerns as we
are so early in the process.
Researchers say that a
diagnostic tool.
They will take the study and
diagnose someone one way or
another.
What it does is form a common
language around how we can talk
about the disease, create
clinical trials to better
understand treatments and work
towards creating diagnostic
tests.
Giving someone a test and
saying, do you have this?
Another things researchers will
tell you is they did not use lab
data to see if these people did
have long covid.
It's survey data which has its
limitations, but another step in
this process would be, do they
have an immune response the
suggests they have these
disorders?
John: You talked to a lot of
people experiencing long covid.
What did they tell you not only
about their experiences and
symptoms but getting medical
care?
>> It has been such a big deal
for so many people.
One patient to said if you are
lucky enough to find a physician
who will listen to you, that's
going a long way.
So many times it's like a round
robin of medical care trying to
find someone who will listen to
them instead of saying it is in
your head and get the care they
need.
A lot of people describe their
care as trial and error.
A lot of people go to Facebook
groups, they describe the weight
as being six months or more.
The wait lists support those
stories.
It's been a story for people, so
many of them struggled to just
get up and walk across the room
much less trying to get
transportation or childcare.
>> Earlier you mentioned looking
for antibodies.
What is being done to further
understand this condition and
figure out the best ways to
treat it?
Great question.
That is one of the things this
study supports, looking at these
12 symptoms, how can we treat
those symptoms and design
clinical studies that are
targeting those symptoms and see
what happens when we do.
Are there areas where we need to
do more research, looking at
long covid in pediatric
patients, pregnant people.
Those are part of this broader
initiative from the nih which
the study is a part of, but
there is certainly a long wait
to go and patients have been
waiting a long way.
John: Thank you very much.