Okay good morning all
it is noon i'd like to start these
things on time
and i definitely welcome you all it's uh
still a little bit smoky hopefully fires
in california
are squelched uh
you're here for our 13th session
in our echo covid 19
series now the purpose of this
has been to bring you keep us all
updated
with uh current analysis and advice
regarding the
very rapidly changing developments
in the coven 19 pandemic
our entire program and in particular
this series
is made possible due to the support from
the university of utah
health office of network development and
telehealth
during this series if you've joined us
previously you have
heard from a multi-disciplinary group of
experts representing public health
clinical care laboratory medicine
pharmacotherapy medical policy making
economics and today we have a little
twist on clinical care
because the pandemic has twisted us
about
so to speak so before we get to
our speaker today
sarah day will come on and talk to you
about the mechanics of zoom and a few
other housekeeping issues
we'll do a couple of polling questions
and then
we'll get going so sarah you're up
thank you dr box uh thank you everyone
for joining
uh we ask that you put your first and
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and thank you everyone dr box do you
want to do the pulling questions
i'll do them if you'll post them
we are ready to go with our polling
questions so
do you personally know someone who has
been infected
and cleared the sars kobe 2 virus
and when we asked this question
six weeks ago the results were almost
flipped from the ratio that you see here
which is roughly three to one yes
to know six weeks ago very few people
knew somebody personally so i think uh
this says a lot and hopefully it means a
lot about people's willingness to
continue
to take precautions all right
next question if yes does that
individual have lingering post-viral
clearance ailments of any kind
so it's about 60 40. so
more than not people are experiencing
post-viral syndromes how about that
okay and next
and last question if you are
a medical provider do you have patients
with
post-viral syndromes from other
infectious diseases
now some of us probably take care of
these patients and we're not aware that
their ailment
is post viral because we fail to ask
questions like that sometimes but again
um small numbers so far who've reported
but out of the 15 reports
12 of those providers have patients with
post spiral syndromes
so i think this is an extraordinarily
timely topic and so
in order to help us understand you can
take that down
sarah in order to help us understand
the science of post-viral syndromes and
what
that such science can teach us about
covet 19 patients
who are slow to recover we're extremely
fortunate
to have today speaker
dr cindy bateman
is a very distinguished
individual in the area of myalgic
encephalitis chronic fatigue syndrome
hereafter referred to as
necfs
dr bateman has spent more than 20 years
of her career
focusing on this and she is
she has not only national but
international
recognition for her work and if
if uh
i may uh mention it and i'm gonna blank
on the name of the movie for those of
you who wonder what myalgic encephalitis
is in 2017
somebody help me out here the name of
the movie
but there was a a fairly significant
movie about an
individual who suffers from this
yep it's called unrest unrest thanks
cindy well dr bateman
is the founder and the chief medical
officer of the bateman horn center of
excellent for excellence for me cfs
and fibromyalgia it's here in salt lake
city
she did part of her training
at the university of utah after she
attended
johns hopkins medical school now dr
bateman
as i said has international acclaim as
an expert in the field
she has scores of literature published
in peer-reviewed journals
she's been an invited lecturer and an
advisor
at multiple international and national
conferences and advisory committees
she was one of the authors of the 2011
mecfs case definition
as a consequence of the international
consensus criteria
meeting and she has also served
as one of the experts on the committee
on the diagnostic criteria for
myalgic encephalitis chronic fatigue
syndrome
that was convened in 2015 by the
institute
of medicine
her insight into the evaluation and care
of those lingering ailments after
viral clear clearance is going to be
very enlightening for us and it's
my pleasure at this point to turn
today's meeting over to dr bateman cindy
thank you very much all right does that
look good
yes it does all right thank you so much
for the chance to come
and talk about my favorite subject not
covered 19 but
uh post viral illnesses and illnesses
that
we have that are kind of mysterious it's
been fun to be a detective all these
years
and uh i think just sticking with it a
long time is one of the best things
to help you get really good at something
so i want to start you know normally in
echo we start with a case
so instead of an individual case i'm
going to talk to you about an online
survey
that was done with about 1500 people
who had covet 19 and have not gotten
better this they're kind of gathering
online in different
places um and
you can actually look at this whole
questionnaire if you'd like to i think
that there are now
like 12 000 people uh
that are online in this group
so they were mostly between age 30 and
60
and 54 of these patients
who got together for this online survey
had symptoms for at least three months
lingering after their infection
but the most striking thing is that
41 of those patients said the doctors
had not listened to
or believed them so this is sort of a
reflection of uh
our lack of understanding in as
physicians
about the kinds of things that can
happen after people have a severe
infection or a viral infection i took
this
uh from that very same
questionnaire and you know there were
1500 people just to remind you
it's a really long long thing so i just
put the first half of it up on the graph
but you can see that the most common
lingering symptoms among these patients
are fatigue and fatigue is the
predominant
symptom body aches
shortness of breath cognitive
difficulty concentrating or focusing
inability to exercise or be active
headache difficulty sleeping etc and if
you lump some of these like memory
problems and difficulty concentrating
and some of the pain problems you can
see a picture starting to form
so let's look at this from a couple of
other viewpoints
this is a study published
by researchers at the centers for
disease control
in their mmwr morbidity and mortality
weekly report and they queried
patients who had been seen
in outpatient visits at 14 academic
healthcare systems and there were
292 respondents so these aren't
hospitalized patients these are patients
not necessarily hospitalized these are
people who had a test
and were seen by a clinician and the
interviews were done
somewhere between two and three weeks
after their positive test
94 had symptoms at this
at the time of testing that makes sense
since that's probably what took them
into the doctor
but 35 of these respondents have
not returned to their usual state of
health in that two to three week period
and you can sort of see the distribution
by age
and mainly their reporting cough fatigue
shortness of breath
at the time of testing
so this is a really important early
study but
it is quite early and we have yet to see
longer term consequences this study
was done in italy but published in jama
and 143 patients uh who had been
discharged from the hospital
with kova so they've been sick enough to
be in the hospital
brought in medical assessment detailed
history and physical
data history everything
it had been an average of 60 days since
their first symptom
none of them had signs of acute illness
only
12.6 were free of symptoms
and the main symptoms of 55
had three or more and 40 percent had
observed worse in quality of life
so the symptoms are not insignificant
and you can see uh starting with the top
of the list
uh the percentage that complained of
those major symptoms below
and you can see that reflected in a
graph in the article so
the bars on the left side reflect
symptoms during their acute illness
and the bars going to the right
represent
the symptoms that followed the
resolution of their
acute illness fatigue shortness of
breath joint pain chest pain
cough loss of smell sickest syndrome
rhinitis etc
so why are we talking about post-viral
syndromes and covet 19 well i hope i
just
kind of presented that to you in those
early
in those early cases and those
questionnaires
right now it's too early to tell we
don't know enough about this virus
it's too early to tell how much is
coming from lingering
infection or you know acute uh
response to the virus that will
completely go away
and how much is the development of some
kind of a chronic pro-spiral syndrome
but the the the common uh symptoms
uh i've listed sort of an accumulative
way down there some of them are
a mix of subjective symptoms along with
the things that we know
are occurring in in patients and having
to deal with so
fatigue sleepiness and brain fog
musculoskeletal pain and headaches
of course the the respiratory uh
inflammation that's giving people
lingering shortness of breath heart
inflammation
and neurologic symptoms i think we were
a little slow to start to appreciate
the neurological symptoms uh that beyond
the sense of smell and taste
but a lot of cognitive symptoms
dizziness and headache
so i want to go back in time this was a
paper published in 1988 that's the year
i was an
internal medicine intern at the
university of utah hospital
right out of medical school this paper
um talked about post-infectious disease
syndromes
uh and i was getting interested in
chronic fatigue i'm around that time so
i was reading up
about uh post-infectious syndromes
and in the article it addresses these
major
illnesses that we know come from various
kinds of infections
so as i was desi as i was going to use
this in the talk and then i kind of went
back
and i decided to make in blueprint the
ones we now have vaccines for
and and in green print the ones we now
pretty do a pretty good job of having
some kind of antimicrobial to take care
of so
antibiotics or antiviral drugs and
you'll see
that a lot of those things have uh maybe
we're not seeing as much of it i don't
know
you know what we're seeing in the clinic
but what i want to show you is if you
take the same list
and highlight the leftovers they're
basically vaccine reactions
and herpes and herpes family viruses
along with common viral infections and
remember this was
done a long time ago so we know a lot
more about viruses now
but i think that's pretty stark there
may be a reason we're seeing an
emergence of post-viral syndromes
from things that we don't have drugs for
and don't have
vaccines for we're
all i hope familiar uh the older we are
the better with uh post-streptococcal
disorders
acute rheumatic fever and arthritis
um acute glomerulonephritis
sydenham's chorea and but most important
and more
recently we've been aware of something
called pandas
pediatric autoimmune neuropsychiatric
disorders which
are neurologic disorders of the brain
that can follow an untreated strep
infection
but overall these are less and less
common because what we have rapid
testing
and we have treatment options how many
times have you heard that during the
covet epidemic
test test test and then we've got to
develop treatments because
if you do you don't have to use the more
archaic methods of
you know wearing masks and social
isolation and things
so post post-viral syndromes um
the most common viruses now that we
associate with post-viral
fatigue which is an actual uh diagnosis
i put the icd-10 code down there
post-viral fatigue syndrome
um they're herpes family viruses which
uh remain latent and they can reactivate
especially in immunocompromised patients
uh parvovirus
which i think was only human virus was
only
uh identified like in 1970. west nile
virus and other
flavor viruses um and coronaviruses
we're starting to
have a bigger awareness of and i'm going
to talk to you a little bit about some
of these
viruses herpes family viruses we're
familiar with
they they're eight of the hundred that
routinely affect human beings
and in that list again i put uh the
green
herpes simplex viruses we've got pretty
dang good antivirals
to treat it varicella's oster virus
not quite as good but if we get the
infection early we can usually treat it
and we have a vaccine and then
cytomegalovirus
was still a problem uh we do have some
drugs to treat it but we tend to reserve
those drugs for
you know compromised patients uh and
people who have well-documented
uh recurrent disease but we still really
don't have immunizations or antivirals
for
epstein-barr virus hhv-6 hhv7
and hhva which is the capucic sarcoma
virus
which i hope we're not seeing as much of
either
in way back uh in the early
days long time ago 2006
uh this study was published and the i
think the nih funded this study in
australia
they really wanted to do a prospective
study because that's
the big expensive study where you can
learn a lot more and you could be more
certain about what's happening
so they studied acute infection
uh presenting through of these three
different pathogens epstein-barr virus
ross river virus
and coxiella brunetti the last one's not
a virus but
that's all right because i don't want to
change the title of my talk
they looked at 253 patients who
developed acute infection
and then they followed them like every
three months
for 12 months and what they learned
is about 11
we always round down to 10 but 11 at the
one year mark
had fatigue musculoskeletal pain
neurocognitive difficulties and mood
disturbances
and there was this kind of stereotyped
presentation that they had
that met criteria for chronic fatigue
syndrome at the time
and it's interesting because they
analyzed and analyzed and analyzed
people's mental health and their you
know
and the only thing that predicted the
outcome was how severe the initial
infection
was across all three um so this has been
a study
that has been stuck in my mind for a
long time
let's talk about as an example west nile
virus
we were i think very scared of it when
it first came out i think we've become a
little
uh numb to it i doubt many of us um
it's not probably that common to do
testing
but this was a study a well-funded study
done by christie murray and her team
um they studied 144 people who'd been
diagnosed with west nile virus
and 40 continued to experience symptoms
related to west nile
virus up to eight years later they
complained of
fatigue weakness depression difficulty
walking or feeling off balance
and memory loss and down below you know
in rare cases
paralysis tremors and seizures and you
can see it didn't change much over
two years five years and eight years
still 40
were reporting some chronic symptoms i
know about this study because i have a
patient in my clinic
who was well um developed a mildly
symptomatic case of west nile virus
and then developed he met craig he
developed a chronic illness
and he meets criteria for chronic
fatigue syndrome and fibromyalgia but he
also has
pots postural orthostatic tachycardia
syndrome so there were neurologic
consequences of his
fairly mild west nile virus infection
and when they re-examined as a separate
paper but the same study
the most common people to develop
chronic symptoms were women
people less than 50 years of age and
those who were more symptomatic
at the time uh that
those were more symptomatic at the
beginning but interestingly they were
able to
show that pro-inflammatory and antiviral
cytokines
were evident in those patients with
chronic illness and we know that a lot
of cytokines are not very specific and
we look at them in other illnesses
but um knowing that they're riled up
and involved may help us understand what
perpetuates
chronic illness symptoms and in their
article they suggested
that clinicians should really think
about west nile
virus infection as a possible factor uh
when evaluating prolonged fatigue
following a
febrile viral illness and i just put
down here to remind us that some of the
other
common flava viruses we've heard of are
dengue and zika
and there are more so sometimes they
create severe illness but particularly
west nile virus which we know is
around and comes back every year there
are probably many many sub
clinical cases of west nile virus that
probably never get identified
so we you all may remember
this um sars kobe
one the first uh sars infection that
seemed to spread from china there was a
sudden outbreak in toronto
and it was because a woman had
lived i think she uh sat on a plane
next to someone from china coming back
from europe or something and there's
actually
a real very good epidemiologic study and
contact tracing
but before long 273 people
had confirmed sars and 44 died but
they were so quick at isolating people
um doing contact tracing that the the
whole
of the epidemic died down very quickly
but
years later several years later there
were 22
um of these subjects mostly health care
workers
who were still unable to return to work
and
they'd been sick in a range of 13 to 36
months
and they were having sleep disturbances
bodily symptoms and mood symptoms so
harvey muldowsky who's a famous sleep
doctor who studies fibromyalgia sleep
pulled together a study of these
patients and
he was able to show compared to healthy
controls
and fibromyalgia patients that um and
the fibro patients were in the middle
so healthy controls had the least
symptoms fibromyalgia next
and then the post sar subject had more
mild to moderate depression sleep
disturbances
uh fatigue you know arising unrefreshed
and having body aches
he called it uh fibromyalgia but uh we
know that maybe these labels need to be
broadened a little bit
uh in how we look at post-infectious
syndromes
so i want to talk very briefly about
mecfs myalgic encephalomyelitis chronic
fatigue syndrome
this is a a defined debilitating
multisystem illness characterized by
central and peripheral nervous system
disease
immune manifestations and impaired
cellular
metabolism we think it is a post-viral
or post-infection syndrome but
as we've talked about sometimes it's
really difficult to capture
what makes people sick in the beginning
and
down the road there's no evidence of the
virus if the virus is
cleared or latent or somehow hard to
find
and not all post-spiral syndromes end up
with this here
severe multi-system debilitating disease
but it does exist it's well defined
and well studied so let's go back to
a cumulative case report um
this is a a study of uh
a good study that was done out of
stanford
and they have a pretty big chronic
fatigue syndrome clinic
they queried a 150 well-defined mecfs
patients in a survey
and asked about uh onset factors now it
did not include the whole
oh natalia you took my dots out so i did
not include the whole
chart i just took the top tier of the
chart because you know it gets
progressively
uh less common and i just tried to keep
things above about
10 of subjects but you can see that
the majority of people relate the onset
of their illness to an
infectious illness and having a lot of
stress or major life events
and then honestly if you lump the next
three
environmental exposures recent
international and
recent domestic travel you have
something along the lines of exposure
uh potential exposure to agents that
could be toxic in the body
if you just look at the patients who
reported an
infection as the thing they think
started their illness
it's kind of stratified pretty pretty
evenly
around upper respiratory infections a
well-defined um infection that we you
know got a test
and was established like uh epstein-barr
virus for example and then a group that
just
had a had a flu syndrome that was maybe
bigger than just you know an upper
respiratory and then there was kind of a
lump
group and then i i'm surprised it's so
small because we do see patients
who seem to have illness triggered by
some kind of gastroenteritis
and then lack of resolution and then the
list goes on and of course these are the
opinion
of the patients because it's very hard
to document those things but those are
very consistent findings
we know that many infections are capable
as
of causing that many viruses are capable
of causing a post-viral syndrome
and a number of viruses
as well as non-viral pathogens have been
shown one way or another either in
prospective studies or other kind of
studies
to uh to go on to meet the clinical
criteria
for mecfs including epstein-barr virus
which is the one we have the most data
on
other herpes viruses parvo b19 west nile
virus
enteroviruses which tend to focus on the
gi tract and some are neurotropic um
but these are these are infections that
we tend to just let go
uh that will resolve on their own and
yet we do have data
that there doesn't seem to be a single
pathogen but that a number of different
viruses
and other pathogens can lead down the
path to a
post-infectious syndrome and we think
this the
the research in mecfs is starting to
show that
there's probably some lingering symptoms
from uh the virus itself
and where in the body that virus
targeted but also
there seems to be a chronic and abnormal
inflammatory response
and the immune system is very
complicated uh it's difficult sometimes
to
tell what's going on and it can get out
of kilter and
go on and on in ways that aren't just an
autoimmune disease but
ways that go on to lead to problems
so the other thing to know is that that
the way
mecfs is defined now is by core symptoms
that everybody has
in the studies um but then there are a
lot of symptoms that occur
in some people but not at others or in
some part of their disease but not
others
and we really don't know how much of
that is due to
the systems the disease duration and the
development of
comorbid conditions which i'll talk
about in just a minute
so the core criteria for me cfs
everybody should know these are the ones
from the institute of medicine
uh evidence-based diagnostic criteria
and the core symptoms are
impaired normal function that's
cognitive and physical
uh that is manifest or accompanied by
fatigue
uh it can be a working diagnosis but you
know we try to get
from the minute the symptoms onset but
we try to wait six months before
labeling people with this uh definition
of a severe
unremitting chronic illness patients
have post-exertional
malaise they have activity intolerance
and symptoms flare
when they try to be active all kinds of
sleep disruptions
and then for by this definition either
cognitive impairment orthostatic
intolerance
but note down below that the other very
common symptoms are
broad um all kinds of chronic pain
issues
immune manifestations immune slash
infection and
neuroendocrine manifestations so this
heterogeneous
presentation has made it hard but this
list is even more interesting i think
and that is these are commonly comorbid
in patients
with mecfs and we don't really
know how much of it is cored mecfs and
how much of it
develops because of this chronic immune
dysfunction
leading to pain and neuropathies and
neuroinflammatory changes
and sleep and autonomic problems and all
kinds of allergic
and autoimmune diseases affecting
multiple systems
but these are all disorders and by the
way if you see someone with me cfs
these are things you can latch on to and
treat
these coborg conditions and you know you
don't have to lump
me cfs into one big category and say
there's nothing we can do for you
because there are lots of things that
can be done to treat these comorbid
conditions
i threw this in because i thought it was
super interesting and that is
there has been a study done that took
mitochondria from mecfs patients created
um a an immortal cell line
using these well-known u2 os cells that
are in
an immortal cell line and they put
hhv-6 in there and activated and they
were able to show
that hhv-6 can fragment mitochondria
and cause a lot of mitochondrial
dysfunction in the cell
which may have to do with people's
severe
activity and tolerance both cognitively
and physically
so this is just a in vitro study but
very provocative
i also want to share this study that i
just love and that is
um this was uh it been fairly recent
but when astronauts go into space what
that's pretty stressful
right i mean they don't know if they're
gonna die if they're gonna crash
they're well trained but in this study
they took
saliva and urine from astronauts who
came back
to earth and they could detect herpes
viruses
by pcr in their saliva and urine so they
were react
this stress they were reactivating these
viruses ebv
zoster herpes simplex and cmv
and some of them went on to develop a
clinical illness but a lot of them
didn't because what they're healthy
strong so viruses reactivate all the
time
and it really has to do with our hp
access and our stress response system
and the way those things change uh
and in the way we fight at viruses and
so why do we want to talk about this was
covered
19 well that's because we're seeing all
these long haulers and
it's really hard to tell i put this in
again how much of it
until we wait longer how much it is this
nasty
virus that goes everywhere in the body
and how much of it is some other kind of
uh problem developing that uh in the
nervous system inflammatory problems
allergic reactions and those kind of
things
so we do know that sars kobe 2
enters can enter the nervous system it
can be entered through the bloodstream
or the peripheral nervous system through
axonal transition we have evidence of
it impacting the olfactory nerve and
trigeminal fibers
and the vagus nerve is also a very
common portal
uh for the virus and of course it can go
everywhere
that your blood goes because of ace2
receptors lining blood vessels
and i was reading through papers about
neurologic and cognitive symptoms and
this is an interesting paper
it's called are we it was early but it
said are we facing
a crashing wave of neuropsych sequela of
cobit 19
and they discussed in the paper how not
only viral infiltration
in the central nervous system but what
cytokines do
uh peripheral immune cells coming into
the cns
post-infectious autoimmunity and i threw
neuroimmune in there which is kind of
what i think the other one means
and gut microbial translocation and the
way the gut relates to our immune system
a paper that just barely came out this
is a preprint
looked at the lymph nodes and spleen of
people who died
from covid and they
had lack of germinal centers
in their lymph nodes and spleen and um
it they tracked it down to uh
that t helper cell that gets blocked and
depletion of these
informed b cells and the b cells that
were rotating around were basically
generic b
cells as opposed to ones that are more
potent and form in the germinal centers
so we have you know this may be
triggered by the cytokine
storm which is what they suggested
but it may also um reflect
this kind of a broken immune system
because of the way the virus has adapted
to
make itself successful
uh that sort of cripples immune response
down the road
and as clinicians we tend to miss more
invisible conditions i'm just going to
say we
i know this from my field we you know we
don't really know how to look for neural
inflammation
we miss the multitude of small fiber
neuropathy cases probably 50 percent of
fibrocasins
fibromyalgia cases have small fiber
neuropathy
there are lots of auto antibodies we
don't have tests for
there's an autoimmune disease for every
organ in the body and they don't always
raise the sed rate or crp
and we also don't consider immune
dysregulation very important unless it's
severe and immunocompromises people but
it may
be that we have to stop thinking that
way so
this is why i think it really matters in
this setting and that is
we're obs understandably traumatized and
upset about the acute infections and the
death rate
um and but you know what we don't we're
not paying
attention we traditionally don't pay
attention to what happens after
infection and hopefully we can raise our
awareness this time but think about this
the people who get coveted 19 have been
through
the most stressful period you can
possibly imagine
i mean we're all stressed and we're not
sick so add all that
you know to not getting tests and huge
fear and unprecedented isolation and
loneliness and then not being believed
if they have persistent symptoms
and i will say that there probably are
persistent mental health
symptoms but many physiologic symptoms
can be misdiagnosed
as anxiety or depression so recognizing
a pattern of post viral
illness especially when there are known
criteria and supportive treatment
approaches
that's empowering to patients it's
empowering to physicians
and i firmly believe that early
intervention can improve long-term
prognosis from all my years of working
in this field
so not only you know i'd love to learn
everything we can about covet but i
would really like kovad
to teach us about post-infectious
fatigue syndromes
and mecfs because these are illnesses
that have been completely
neglected so uh this is something
there's something called the us mecfs
clinician coalition that i
am part of we're putting together a
letter to submit but we're
saying that it's really important that
we have longitudinal studies
of kobe 2 and that we ask the questions
that occur the symptoms that occur in
people with mecfs and
post-viral fatigue syndrome i didn't pro
i didn't point it out but in the
it's some of the studies they didn't ask
at all about cognition
about exercise intolerance and about you
know neurologic symptoms
because a study is only as good as the
questions you ask
so that's the end of my talk and i would
love to open it up for questions and i
also
want to tell you that dr braden yeoman
is a physician in our clinic and he i
hope he pitches in and answers some
questions if it would be helpful
thank you we have a question
what about ebv
so ebv epstein-barr virus
um is one of those viruses we know
can be latent that we know can
reactivate and that we know can be
associated with the onset
of and post-viral syndromes but it
doesn't cause them all
so it's probably just one of those
viruses that's super common
um and so we see it more i've seen
well-documented ebv in in uh young
people
and occasionally in middle-aged people
to document meaning you know that an igm
they had an acute mono
uh clinically and then go on to develop
it but
the thing to remember is there's no way
down the road
right now to know what pathogen caused
the infection
because it's very indirect to look at
antibodies
and antibodies are all over the place
and
sometimes you can use them to prove a
point if you do them at intervals or
you know but and i think it's a problem
in primary care assuming
that just looking at antibodies it's
going to tell you what the underlying
virus is
but what we're learning about any cfs is
that most of the time maybe it doesn't
matter
right we don't know how much
reactivation is really clinical
or how much is just driving an immune
response and i think sometimes when we
treat with antivirals we're just
suppressing
a little bit of kind of activity of
reactivation which is giving your immune
system a long rest
as opposed to really treating the virus
dr breeman could you please clarify what
you mean by neuroinflammation in post
viral patients
and its difficulty in being recognized
is this the same type of inflammation
you might pick up on
in meningitis so neuroinflammation is a
term
that means something like an autoimmune
response out in the periphery
but because on the other side of the
blood-brain barrier the cells of the
immune system are different
they're different kinds of cells they
have different kinds of function and we
define
the term autoimmune based on
white blood cells right and what they do
so
neuroimmune is a kind of a blanket term
to suggest there's an
a chronic inflammatory process going on
in the brain so
lots of illnesses we consider
neuroimmune like parkinson's and
ms but they're probably a lot of neuro
immune processes we don't have tests for
very well that are ongoing and there's
some evidence
in me cfs that there are areas of
microglial activation in the brain which
is kind of an
inflammation in the brain is there any
evidence yet that post cobia 19 patients
develop pots
you know i haven't seen a study but
i've heard people's description of their
illness and i'm pretty dang sure
that people are getting autonomic
dysfunction in pots i can tell you as a
clinician
the only time i've heard people say they
had to crawl
into the kitchen right that they
couldn't walk
it's almost always some kind of a
dysautonomia
so listening to people and helping you
know eliciting a history
that they can't stand up without having
really bad symptoms they often
have no idea what's going on they just
know they got to get down
and the more they stay down the better
they do and the more they're up the
worse they do
so i think it's going to be common
and commonly missed thank you
how do you recommend that we follow our
covet patients
typically i'm following their physical
symptoms are you recommending that we
follow their mental health any
differently
i do i mean i don't know what you're
doing right but
yes um i think the data suggests that if
they're
not well that the kinds of questions you
need to ask
are the kinds of things typical for
post-viral syndromes
they that that thing in the the big
survey in italy
they didn't ask at all about sleep about
exercise tolerance and about cognitive
symptoms because
it's just the way they designed the
survey right but when you listen to
patients
the main thing is fatigue and activity
intolerance
and muscle or joint pain of course i
think the shortness of breath is very
specific for covid we don't really see
that
in more post viral symptoms post viral
syndromes unless
they involve the the chest although you
can get a lot of chest symptoms with
pots and orthostatic intolerance and
sometimes
people get treated over and over and
over for asthma when what they really
have
is pots or static intolerance so
those symptoms and the mental health
problems there's just a
article published in the salt lake
tribune on sunday really good
article about a big survey about mental
health not just in the u.s but around
the world
and this has been devastating people
it's super stressful
and hopefully it'll pass as the crisis
passes
what about cognitive screening using
simple tests
um you know it's it's hard to get the
right kind of cognitive screening
because we tend to do so much mental
health screening
but you can do a mini mental exam right
we have a tool that's proprietary that
we use in research and in clinic called
um
that is uh i can't remember what it's
called
the dana testing that's a company but
this is something we need to work on
so it can also be done by history you
know asking people
are they having trouble remembering
things are they having trouble
uh doing their checkbook calculation
it's usually not a dementia
um although we're worried about dementia
but in most post-viral fatigue syndromes
it's more of a inflammation of the brain
with cognitive slowing and also the
effects of orthostatic intolerance
causing
reduced perfusion to the brain over and
over and creating symptoms
you have to ask though um
how helpful is ldn in these post-viral
patients
so you know there aren't a lot of
publications yet
about ldn which is low-dose naltrexone
and so i can just speak from experience
and i will say that i consider low-dose
naltrexone
in ordinary there's nothing ordinary
about fibromyalgia but pretty
straightforward fibromyalgia
you know which is muscle aching and
stiffness
and fatigue and a lot of pain
amplification and brain fog and sleep
disturbances
and if you and the function is usually
less impaired um and if they can push
through they can create a lot of
symptoms but and they're kind of
miserable
um but not as bad as people who meet
mecfs criteria
and those patients respond i think if we
did a trial it would be as good as the
fibromyalgia fda approved drugs because
you know i prescribed those drugs for a
long time i did as part of the clinical
trials
and ldn is awesome it's a very useful
tool
how useful it will be for other kinds of
neural inflammation
i think the jury's out but the kind that
tends to lead to hyperalgesia and pain
seems to be a great tool and it helps
keep people away from opioids which are
not very effective because higher doses
are needed and tolerance develops and
then
trying to come off as a nightmare
because it you know worsens their
illness symptoms
dr bateman in your experience for the
last 20 years when people present to you
with chronic symptoms of fatigue
how often do you find that they
personally recognize that there was
possibly an infectious process and that
everything changed after that versus how
many of them
only recognize that they may have had an
infectious trigger
after you ask them as a clinician
you know that's a good question um i'll
say that in the early epidemiologic
studies
of chronic fatigue syndrome um
there was a big bias toward
post-infectious and they also were more
mostly caucasian and mostly women and so
it was kind of called the the yuppie flu
and what we've learned is you can't do
epidemiol epidemiologic studies
using patients from doctors offices
because the selection bias is tremendous
um so they're much more able to fend for
themselves and get into the doctor
and be verbal and you know communicate
later epidemiologic studies of mecfs
showed that it was actually
higher in uh lower
socioeconomic groups and across other
ethnic uh backgrounds and so if you
think about what's happening right now
with covet
right that there are people um we know
who are higher risk um
and it's kind of complicated right uh
latinos
and african-americans and uh native
americans and
we don't know exactly how much of its
access to care how much of it is their
health in general
you know all of those things how much of
it is their inessential jobs
um they don't have the luxury of working
from home and all kinds of things but
the same is probably true with most post
viral syndromes
um and so um we don't really know the
answer
uh and oh and those population based
studies
showed it was more common to have
gradual onset
than to have acute onset with an
infection
so remember these are just subjective
criteria though
so this is why we need to we know that
fatigue and
widespread pain are a big problem in our
society that that epidemiologic study
found
that there were twice as many people who
met the criteria
then when they brought them in half of
those people had identifiable illness
that had never been
treated or identified so that's a huge
need too they didn't really have chronic
fatigue syndrome they just needed
medical care and attention so we just
got to slow down a little bit
right and be able to do chronic illness
management and so when people present
with chronic fatigue or chronic
amplified pain
how important is it that we as
clinicians add
a question in our history about
infectious triggers
i guess uh but in i don't know the
answer and i'd love to hear your own
opinion but to me it relates to how long
they've been
sick so the duration of their illness is
really important because in the in the
beginning
of illness you can get serology
you can look for an igm you can
you know have options for intervening
if there's an infection that could be
stopped
the problem is we tend to wait two
three months before or more
and many patients who have this kind of
a problem don't get to someone for
years right who wants to dig in and try
to see
uh what they had so the longer people
been sick
probably the less relevant it is um i
will say
that i have a few rare patients that i
think
actually have reactivating herpes
viruses
driving their illness but that's pretty
uncommon
but we can tell i mean you know they get
symptoms low grade fevers tender lymph
nodes
and when we put her on antivirals you
know she
just got better right away but that is
by far a very small minority
uh cindy you mentioned a link
to ocd tourettes
from prior infection how well is this
documented and
is there anything that can be done
or is this a non-changing
insult to the neuron that's a good
question
and it kind of gets out of my
area of expertise because it's mostly in
pediatric age group and it's mostly
post-streptococcal but if you just eat
there's
something called the pandas network
p-a-n-d-a-s
there's a huge amount of information
about this illness and what to do
and yes they do try to make sure they
clear the strap
but um you know if this is the argument
for treating early and preventively
and you know doing testing and in uh
this is kind of the last remnants
of strep diseases that we see
sorry and it probably happens when we
miss the diagnosis
and there are comorbid conditions that
we're not really aware of
and then kids to go on to get these
horrible lifelong neurologic symptoms
so right now the prognosis isn't very
good once they get it but if you want to
learn more about it there's tons of
information about pandas
great thank you another question uh
so is screening with the institute of
medicine criteria useful
for post covid 19 sequelae
yeah i do i'm a big supporter of those
iom
criteria for mecfs what what it leaves
out
are all the post-viral syndromes that
don't meet those more severe
you know multi-system criteria they're
all important
and we're going to see you know a string
of
post-viral sequela from covid and we
don't know
what percentage of people will go on to
meet
those criteria that define a much more
ill
and impaired group of people um
but what we and i that my main
one of the main criticisms i have of our
field
and it's hard to change and that is we
define the illness by people who've been
sick for a long time
so we um you know it's kind of circular
right we define people who've been i
mean in lilly choo's
questionnaire the average length of
illness was 13 years
of illness so we don't really know
what those post spiral fatigue steps are
that take
people to the place where they have uh
full-blown mecfs
i think we kind of know when it happens
to people all of a sudden
but i personally think that most people
don't start their illness with a
dramatic woke up in the morning
with an infection and know exactly what
day it happened
so what what's the easiest way to find
those
in uh institute of medicine criteria
probably
several of us don't really uh access
that very often
right um you know what i would suggest
and there's a little bit of
self-interest here but we've worked a
lot on it um
our website um it's
batemanhorncenter.org
is an educational website and if you go
to this
the tab that says provider resources
we've got links to everything um
the best way to find it is to put the
title in zoom but
you'll have to write it down it's
beyond myalgic encephalomyelitis
what's the rest of it that's okay you
can get it i'll copy and paste it in the
chat yeah
okay that's great but no i'd really
encourage people who have an interest
this is
aside from covid but we think applies um
if you're interested and you want more
resources about mecfs we've got a
wealth of resources now on our website
mostly
links and references and you know some
of the most up-to-date
uh information that might be interesting
dr bateman our last question is are
there common clinical signals
that are sorry
that are observed in patients with post
infectious syndromes
so yeah i mean i think it's the things
that we saw
in those studies um and it's sort of
you gotta kind of put together the the
studies done by doctors
and the reports by patients because you
know the ones done in a medical setting
or research setting they choose the
questions and i think they've missed
some
but patients reporting their symptoms
you know that those numbers are getting
bigger and bigger and i think
those are the things we need to look for
and i think most of us in our clinic
believe that
instituting supportive care is really
important from the beginning
and one of the hallmarks of mecfs is
exercise intolerance
and you know we would advise people not
to push the envelope until they're
better
because lots of people are experiencing
covet or finding it's very difficult
they feel okay for a while sort of like
when you're getting better from the flu
but then you get up and try to do things
and you're back in the bed again
so maybe allow your body to
completely recover before you start to
stress it again
well thank you very much cindy this has
been a spectacularly
informative hour and thank you for your
expertise and your willingness to come
and talk to us today
um and uh i'm sure if this goes on long
enough which it may
we'll have to have you back so anyway
yeah we'll come back and talk about
treatments down the road how's that yeah
when we get that far that's great
and thanks to all of you for your
attendance today
you
