Anyone who has ME/CFS, fibromyalgia, or a similar illness may find a bewildering array of ideas regarding various underlying causes and treatments.
hi my name is Robin want to welcome you
to the Bateman or Center or monthly
education broadcast tonight we're
pleased to have dr. Nathan Holliday an
internal medicine specialist and solo
practice has a focus in treating
illnesses involving severe chronic
fatigue and white spray painting
he's a member of the NIH CDC NBS CFS
that's a mouthful clinical data element
working group you can apply with
additional information on dr. Holliday
and Holliday MD dot-com / bio he grew up
in Longwood Florida
his bio chemistry degree master's degree
at Brigham Young University an MD and
the PhD molecular biophysics from the
University of Texas Southwestern in
Dallas he had an internal medicine
residency affiliated was East Carolina
University and as a clinic assistant
professor of general internal medicine
with East Carolina University physicians
instructed residents and faculty members
on evidence-based medicine he's treated
by Jose Canseco myelitis in chronic
fatigue syndrome and fibromyalgia has a
position with the bateman orrin Center
in Salt Lake City prior to starting his
solo practice is also an adjunct
assistant professor at the University of
Utah he continues to be a member of the
mecfs working group for NIH alright well
for sound purposes I might be sitting
here most of the time but but thank you
all for coming and thank you all whoever
is participating online I appreciate
this opportunity to talk about something
that has really been both kind of near
and dear to my heart and also from just
a medical standpoint just a fascinating
area to work in my goal and my hope is
that for those who are those who are
patients or family members of patients
what I'd like to do is take a step back
because
so often digging into one little area or
the next and I want to take a step back
and and I've had the opportunity over
the last about one and a half to two
years to really come in as kind of
someone new to this area and have to go
through the process of looking through
all the research evidence all the data
sorting through all the stuff is you all
probably know you find all kinds of
things online and sorting through all of
that and filtering out what is really
what are some kind of the really key
aspects when we look at this illness
these illnesses from a standpoint of
what causes them what do we do about
them
and so I want to kind of put together
present the picture that I've put
together in a nutshell and and I can't
really dig deep because I'm trying to go
broad so I'm gonna have to move through
things quickly but I hope still that
kind of taken the panoramic view will
will will be an enlightening in one way
or another so I've I've focused on Emmy
and chronic fatigue syndrome I'll check
encephalomyelitis and chronic fatigue
syndrome but also there's so much
overlap between other illnesses like
fibromyalgia that I want to it some of
this definitely kind of applies and it
challenges actually our way of looking
at illness and I'm going to talk about
that because I think that's been part of
the big difficulty in terms of making
progress both clinically and in research
you almost have to look at it a
different way than we usually look at
illness so here I just put out some
myths and some realities
so obviously one huge myth which
hopefully is being mostly dispelled is
that the illnesses are that these are
primarily psychosomatic things yeah and
I could hardly be further from the truth
another issue is that there's another
myth that there are no objective
for these illnesses that's that's not a
uuu here it said even almost in the end
the third one is there's no there are no
effective treatments now on an
individual case-by-case basis sometimes
that may apply to some degree but in
reality I don't really like that
statement either either and sometimes
you even hear it from from the community
the reality and these illnesses are very
organic very they're not psychological
illnesses there are definitely objective
findings that can be found and and the
majority of patients or and a lot of
patients but the thing is that the
objective findings can vary now that may
be changing somewhat and the other thing
about treatment is it's not that there's
no treatment but there's no
one-size-fits-all treatment at this
point so I'm going to spend a lot of
time talking about the pathophysiology
and that is basically what makes the
illness tick what are the different
underlying problems with the body that
that that go on and I put this little
quote make new friends but keep the old
you may be familiar with the rest of the
phrase but this part is pertinent
because we have some new things that
come are coming out which are very
fascinating very important but then
there's also some older data that I
almost worried that we're kind of
leaving on the side right now and those
involve in particular data relating to
associations with infections and so
forth
and I think you have to put kind of
everything together in order to to put a
full picture together so research shows
that these illnesses in a particular
will say Emmy and CFS their associations
with with infections there are
differences in brain imaging there are
laboratory differences there are
physiological studies that have showed
differences between patients and healthy
individuals like tilt table test in and
xers
testing so it's just a myth if you say
there's no no evidence for physiological
differences or so forth that's totally
false so I'm going to go through some
break it down into different areas and
I'm gonna start with the area of
infections so most people would that's
one of the first things we would think
about if we think about what causes the
illness we think about infections
because we know that a large number of
cases start with an infection but the
problem is when you start to look at
this studies I you don't find a
consistent positive result when you're
looking at associations with infections
so then that throws throws you for a
loop it becomes confusing
well if infections are part of the cause
why why then don't we see any difference
between the blood levels of normal
individuals and patients in terms of
measurements of infections what's clear
this there's not one particular type of
infection for the for mecfs in general
there was a study where it showed that
the it looked at three different
illnesses and all of them after about
six months developed a chronic fatigue
syndrome type picture at approximately
the same rate ten or twenty percent so
there's not one particular illness at
least for the broader some people argue
that severe Amin is an enterovirus
driven process and I don't know if I can
say yea or nay to that exactly but what
I'm going to do is kind of give an
overview on infectious connections so
here commonly associated infections
include the herpes viruses they include
the intro viruses and they include
certain types of atypical bacteria we
might call them
and there's some common themes in terms
of those infections that we connect to
these illnesses the common themes are
number one most or all of these
pathogens most are all of these viruses
bacteria most of them can hide out in
the cells for long periods of time often
like years to a lifetime another common
theme is most of them if not all can get
into the brain and and can camp out
there in the brain that's important you
think about those two facts and and then
you start to think well that that might
explain a lot of things but the thing is
we have to be careful because we we can
tell now that it looks apparent at least
to me from clinical practice from
looking at the research and everything
some symptoms come directly from
infectious processes and some of them if
the infection was a trigger are only
indirectly related to the infections so
I want to kind of distinguish the
difference between an active infection
and a latent infection okay
active infection is what you normally
think about when you get sick when you
come down with a cold when you get skin
infection the virus or bacteria or
whatever is actively spreading itself
trying to spread itself and your body's
actively fighting that back and so
here's an example of a virus you've got
you've got that on the left you've got a
virus entering a cell and then the virus
hijacks the cells machinery and makes
the cell turn into a virus making
Factory and then the virus will leave
the cell and go spread to other cells
and repeat the process that's how
viruses do their dirty work at least in
the active infection stage now there's
also though a latent infection type of
infection and and that is when the virus
may go into the cell but then it doesn't
destroy the cell instead
and what it does is it says I'm going to
camp out here I'm gonna stay here for a
while probably the best-known example of
this is the varicella-zoster virus even
though it happens in all kinds of cases
and this is something that's not obvious
to us as doctors a lot how much this
actually plays a role in illness but the
more I go along the more I see this
plays a big role in illness not just
mecfs but other illnesses too but what
what you see happening at so
varicella-zoster virus you you know you
get chickenpox I mean you know but
before we vaccinate we get chickenpox
when you were five for example and then
when you're 65 you get the shingles so
the virus was actually there the whole
time it didn't ever totally leave the
body and in the meantime is in its
latent form so so anyway and with these
latent viruses or latent infections the
thing is by calling them latent we might
make the mistake of saying they're not
active at all they are that's the thing
and it looks like they can be somewhat
active but they fly under the radar and
and when it's in its latent phase it's
harder to treat alright so herpes
viruses herpes viruses are one class of
infections involved in mecfs as I said
before they can certainly common themes
are they get into the nervous system
they a lot of them can also infect
immune cells they have active and latent
stages and in terms of the immune system
for example one study looked at people
with MS and normal controls but even in
the normal controls several multiple
ones of these viruses these herpes
viruses herpes simplex varicella-zoster
epstein-barr hhv-6 they were found in
the brains of normal supposedly normal
individuals a fair percentage of the
time so this isn't something that's
limited to two mecfs or related
illnesses so so what's the connection
because a lot of people have these
viruses in their brains and don't even
know it so some studies have shown
different percentages of viruses but
then other studies have not replicated
that but we do know it's very clear in
the clinic someone comes in they say I
got mono I had a blood test it showed it
was mono and I've never been the same
sense so sometimes it's very clear that
there is a connection
another thing we know is from anecdotal
evidence that some patients respond to
antiviral treatment so that's evidence
also that the virus is actually probably
doing something in there also in
fibromyalgia there there's now been some
work on developing a combination of an
antiviral medicine and celecoxib now
this is a patented process and so it
requires permission to use it but a
doctor
Pridgen has been working on that and and
it's interesting so this is it looks
like there's a viral process going on in
a lot of those cases as well however
this is a figure which is the references
cited there by Lobo at all and if you
look at this figure and I'm not sure if
I okay so if you look at this figure if
you look kind of the two left columns
the far left column
it looks at antibody levels of healthy
controls and then the next column next
to it looks at chronic fatigue syndrome
and if you look at those you don't
really see a huge difference between
healthy patients antibody levels to
epstein-barr and chronic fatigue
syndrome patient levels abstain bar so
that really throws kind of a damper on
the idea of oh we can show a clear
increased viral effect from say
epstein-barr whatever so then then that
adds some confusion well what really is
the virus doing and how often is it
really playing a role but again as I
said there are treatments for herpes
viruses
when they can be connected to the
illness problems are there's really
limited research so I go in as a doctor
I see someone who I think could maybe
have a herpes virus involved number one
I don't have good tools to confirm that
diagnosis number two I don't have good
clinical studies to back me up to get
insurance to pay for it to tell me for
sure it's going to be safe all those
things so there's a lot of challenges
with with that so the next class of
viruses infectious organisms that's big
in the mecfs are the intro pharmacist
now not all of the intro viruses have
been connected the I've just listed
different types of intro viruses but
some of them for example Coxsackie B for
seem to be connected and intro viruses
as their name suggests get into the
stomach and intestines often but they
don't stay there some of them are pretty
nasty critters and and so when a person
say gets viral meningitis good chances
in inter of ours if someone gets
myocarditis a heart infection good
chance it might be an enterovirus
enterovirus can get in the muscles and
very interesting ly yeah there there was
there's some now some very limited
evidence connecting it directly
connecting it I I think to mecfs but
there's evidence that it can get in to
the brain so that could explain some
certain things and severely ill patients
so the problem again with enterovirus is
is you can't really make a direct
diagnosis so you kind of have to go
based on okay what what's the story of
the patient's infection that kind of set
this off if there was one and there are
some blood tests but E and it suggests
that if it's a high level that it's
connected but but you can't really prove
it directly and the thing is even if you
could you can't do a brain by biopsy
that's that's really the big problem in
honor this is if we could do brain
biopsies I think we have moved a lot
farther along but that's kind of a
challenging procedure for patients so so
right now there really no ideal
treatments for inter viruses so in the
cases where we do really think there's
an enterovirus involved unfortunately
there are problems with the treatments
they're either not fda-approved or
haven't been clinically studied there's
one called plaque on oral they tried
studying it for I guess I think it was
the common cold but but it got rejected
and I understand part of that was it
caused some birth control failure and
and they didn't look at this it's
utility and severe illness and there's
some data afterwards that says there's
some utility but in order to apply this
to mecfs number one we'd have to be able
to do it legally and number two we would
need studies to show whether it really
makes a difference in those intro viral
cases and we just don't have that so
there are other kinds of bacteria and
other organisms that have been connected
these are some of them one thing that
I'll mention though as an example a
couple things mycoplasma they've been
shown in the blood stream of people with
chronic fatigue syndrome and Gulf War
Syndrome at increased levels in some
studies but the problem is when they
tried to actually treat it it didn't
seem to make any difference now part of
that due to experience with another one
chlamydia pneumonia
there's experience showing that if you
get the right combination of antibiotics
that can get inside the cell that can
make a bigger difference but that might
not be the whole story it might be it
seems there's something else so you
wonder is that increased infection is
that a marker of the illness or is that
an underlying part of the illness q
fever they did a study with coxiella
Brunetti which causes a chronic fatigue
syndrome type picture and they did a
study in the Netherlands where they
tried treating them with doxycycline for
about half a year and if anything it
looked like on average the patient's
trended towards getting a little bit
worse rather than the better
on the doxycycline so again it looked
like the coxiella is related but is that
what's actually causing it so that
brings us on to the next part in summary
on the infections it does look like in
some cases the infections are actively
contributing to the picture and the
treating those infections might help
although we don't have ideal treatments
we don't have ideal data on treatments
but there's more to the picture than
that so moving on to the moving on from
infections oh one thing I mentioned in
the herpes virus
you know those treatments and other
challenges getting into the brain if
that's a factor in and anyway so there's
more more to it so we'll move on to
immune problems so there are various
immune problems that have been shown and
and these illnesses I mean deficiency
hypersensitivities like – food recent
more evidence for possible autoimmunity
playing a role and differences in
cytokines there's been some kind of a
big deal made out of a study that came
out from Montoya recently about
cytokines so this just shows this
doesn't show the full immune system this
just shows some components some of which
are pertinent like your on the left
we've got what we call your innate
immune system these are the ones that
that don't attack a specific virus or a
specific bacteria they're just kind of
general defenders in different ways and
then on the right are your adaptive
immunity or your specific defenders so
on the left that went the pertinent one
in particular is NK cell you've heard
problem you might have heard that in
mecfs there's low NK cell function how
is that connected I don't know for sure
all the ways it's connected but one
thing to remember is that NK cells are a
first responder in illness so if the
virus comes in it takes the body maybe
about a week to develop a specific
immune response to that virus before
that weeks up you've got to be doing
something you
can't just let it go go haywire for a
week before you start fighting it off so
NK cells are part of the first-line
response well if your first line
response isn't very effective that could
allow the virus to spread more before
your body can get it in check so that's
one potential way that in K cells are
relevant so going over unto the other
side T cells and antibodies so one
important thing is to recognize there
are two arms of specific immune defenses
antibodies and T cells which one do we
hear more about you hear more about
antibodies right well one reason for
that is antibodies are easier to measure
T cells are hard to measure so but
there's been some but T cells are cells
that specifically attack one target
those types of T's C cells antibodies
also specifically attack one target so
looking at some of the data on cytokines
this these are two of the big things on
cytokines that Strutt have struck me I
both came out of Montoya's group I
believe and on the left is the paper
that we were talking about so cytokines
are molecules that your immune cells
make and that are used to signal the
immune response so these types of
cytokines are different generally things
that drive your inflammation more
cytokines from this standpoint generally
as I understand that when they looked at
more inflammation so interestingly and
mild they looked at disease severity and
they saw different things with different
diseases uh verities so not one
particular pattern of cytokines with
mecfs but actually some opposite
patterns so a mild disease you actually
had on average lower levels of cytokines
than the normal healthy individuals
moderate were similar to normal healthy
individuals and then severe disease had
higher levels than normal healthy
individuals but if you looked at another
factor and this was presented this is
per my recollection of their
presentation that the
meeting last October if they looked at
early illness they found higher levels
of cytokines if they looked at kind of
mid stage illness more average levels of
cytokines and later stage illness lower
levels of cytokines which actually says
that there's a progression of the
illness what's going on
early on when a patient has this illness
is different and it evolves it turns
into something different as you go
through over several years – – and one
of the things that I think is probably
involved with this has to do with the
infections remember we said infections
aren't the only part of it but they are
a part of it and early on that
infectious driven inflammation response
may be higher and as the as that cools
off over time or as the body fights it
down that's one mechanism there are
other possible explanations for this but
but it's interesting to look that even
with individuals the disease will kind
of change from that standpoint most what
most likely over time so Auto antibodies
we started to see autoimmunity some
evidence of autoimmunity some of the
antibodies the main antibodies that have
been identified so far that I'm aware of
are ones to certain receptors like the
beta adrenergic receptors muscarinic
receptors which which which sense
neurotransmitters signals released by
nerves and but but it's not clear
whether this is a cause or this is just
a marker so is that are those antibodies
causing the illness or are they just
kind of there one explanation might
suggest they're just kind of there
because these are different they have
different structures and and they're
linked to nerves so it could be a
byproduct but they could also be causing
some of the illness so we don't really
know there's another connection with D
UTP ACE antibodies so there's some
crossover apparently between your
response to Epstein Barr for example in
response to your
d ut pas antibodies and it's not clear
what this would do but some thought
might say that it increases the
likelihood that cells DNA can mutate or
that it might affect like we talked
about earlier some of the energy
production of the cells so I'm just
speculating I really don't know but one
thing we do know is there's a fraction
of patients who respond to rituximab and
what rituximab does is it kind of
destroys cells that make the antibodies
so 30% ish depending on on the number
the problem is some patients don't
respond to protects mab and it seems
like some of the more severely ill
patients don't respond to rituximab so
going back to what i said for example if
you've got severe emmy and that's
actually due to an intro viral infection
in your brain do you want to be blocking
your antibody response or is that you
know so we've got to really drill down
ok in a certain case what's the picture
here we don't have enough information
yet really but there are more trials
going on of rituximab and they're really
trying to find out how to identify who's
going to respond to to the rituximab
t-cells remember I mentioned t-cells
don't get as much attention but there
was evidence presented recently that
t-cells look different in Emmy and CFS
and this could mean that increased
numbers of specific strains of t-cells
could be due to a response increased
response to the pathogens it could be an
autoimmune response it could be both
we're still waiting to hear the word on
what t-cells are doing so that's the
immune part of our pathophysiology I'm
going to move on to the mitochondria
metabolic endocrine part of the
pathophysiology and some really
interesting things have come out in this
lately too so several studies I'll start
out with several studies have shown mild
endocrine abnormalities and
interestingly I'm on the neuro endocrine
I'm the committee of the chair of the
neuro endocrine clinical data element
subcommittee here
and and looking at this question I think
what's evident is that hormones are not
a primary cause of the illness so much
as abnormal a mild abnormalities and
hormones kind of being an effect or a
marker so they do contribute to the
disease process but they are not the
fundamental cause your thyroid hormone
is not causing your illness okay
something else it may be contributing
but it's not the primary cause also we
know that patterns of small molecules in
the blood are different the metabolites
you find in blood and there are problems
with energy processing and I think
there's I don't fully understand the
differences in those metabolites but it
seems that there's a connection to this
energy processing problem so looking at
the energy processing problem one thing
we know is if you put people on a
treadmill with mecfs especially the more
severe illness on average you don't do
as well surprise surprise so one of the
things is that people can especially in
a more severe side can reach what's
called the anaerobic threshold with less
work and the anaerobic threshold is for
example you kind of think it about it
with regard to weight lift and where do
you go to the point from the point where
your cells are using oxygen to the set
to the point where the cells don't get
enough oxygen so they just have to
quickly break down sugars in completely
and build up acid and so forth so you
can kind of detect where a person's
anaerobic threshold is with this
exercise testing and it takes a lot less
biking in some patients to get to that
anaerobic threshold where all of a
sudden you see a change and their
metabolic activity than it does a normal
person which implies a problem with
their energy production another very
interesting thing this is I think one of
the most fascinating one of the key
points in the whole look at
pathophysiology Ron Davis talked at the
recent open medicine institute meeting
and he
talked about data and it seems like I've
seen heard somewhere that maybe there's
someone else who's done similar work but
I haven't seen what that is but anyway
he described a very interesting study
where they had a way of stressing
individual cells and they could look at
the cell and see if the cell was able to
keep up with stress or not and so they
stressed sick patient cells and healthy
patient cells and healthy patient cells
did fine
sick patient cells of course did not but
when they put the plasma the fluid from
the blood from healthy patients over the
sick cells they the sick cells start
doing better when they put the plasma
from the sick patients over the healthy
cells what happened the healthy cells
got sick that is a fascinating finding
it says there's a factor in the plasma
that that is actually making cells sick
you you've got toxic plasma you know in
some cases and he also said something
that I think was important he made a
little side note this seems like this is
the case both in mild some more mild and
more severe illness so this is kind of
looks like a common theme among a lot of
patients that's important because
there's a lot of heterogeneity a lot of
differences so so and but they and they
boiled it down to the factor looks like
it's a large molecule so he suggested it
could be an antibody going back to that
autoimmune type of thing that we've
talked about it but they haven't pinned
it down or they at least they haven't
reported that they've tended down yet to
my knowledge okay moving on from energy
to the brain and the nerves so once
again if we are looking at objective
abnormalities that have been found in
research they get totally mythical any
idea that we have not found significant
objective evidence of pathophysiology
the problem is just that there's a lot
of variation but we've seen abnormal
blood flow and the brains
patience we have unfortunately I told
you before getting those brain biopsies
it's just just a problem both so it's
too bad we don't have more of that
evidence but some very limited evidence
is present in that that does seem to
confirm the idea that there is like
microglial activation or in other words
kind of in increased inflammation within
the brain one case report came out
recently that mentioned Alzheimer's like
changes and other micro structural
abnormalities that were pretty
significant I don't know that this
applies to everyone but those who are in
a huge fog all the time with the
extensive hypersensitivity and so forth
might not be surprised if things were
pretty discombobulated if you when you
look under a microscope so again this
this is a single case report doesn't
necessarily reply to we don't know how
it applies but you know not not too
surprising and then other brain problems
like hypothalamic abnormalities your
hypothalamus controls things like
sweating and thirst and appetite and you
get changes to those types of things and
and mecfs and does vary from patient to
patient but it's kind of depending on
which part is affected or inflamed or in
fact it would affect it whatever you get
various abnormalities along those lines
so this was kind of data taken from a
study I cited here's Schwartz at home in
1994 when it showed is that if they did
a scan of that looked at the blood flow
in the brain that they would found that
in healthy patients he had on average
one to two areas of limited blood flow
and major depression and chronic fatigue
syndrome he had six to seven on average
but that widely varied and an HIV
dementia he had even more a difference
so between major depression and chronic
fatigue son was so clearly some
validation for those who have major
depression as well right but one
difference between the chronic fatigue
syndrome a major depression is the
overall kind of I guess in the middle of
the brain
some index of more overall flow seem to
be higher and major depression and lower
and chronic fatigue syndrome says this
would suggest that overall there's lower
blood flow in the brain in chronic
fatigue syndrome patients on average
there are also circulatory problems some
patients have been found to have low
blood volumes study looking at neroli
immediately hypotension show that the
majority of patients had would sink up
eyes or get neuro neroli would pass out
you know if you stay on a tilt table for
long enough a lot of patients have pots
which is when you get symptomatic when
you're standing up and you get dizzy and
your heart goes up by 30 beats a minute
or more
and there's that's important because
that's something you can actually kind
of treat to some degree a lot of the
time so I when I went through a lot of
different I went through infections
immune things metabolic abnormalities
circulatory brain abnormalities now how
do these connect to symptoms so one
thing is that that different symptoms
you have to remember the different
symptoms like ESADE the the word myalgic
encephalomyelitis one concern I have
true actually in speaking of the
enterovirus model inter viruses can get
into the muscles and that might cause
myalgias and of course there are other
things that can cause myalgias but not
all pain is myalgia there are lots of
different types of pain and mecfs
patients and fire fibro and others but
you got to really look what type of pain
are you experiencing where it's coming
from because it's not all the same
other symptoms are kind of the same way
so they're actually there's actually it
seems like no one single cause for each
symptom so you got to also kind of look
at what pattern does it follow and what
multiple factors could be causing these
sometimes in a given patient so for
example the bodily fatigue lots of
muscle fatigue weakness as president
especially after exertion so the the
energy processing abnormalities the fact
that your cells can't make ATP as well
that's an obvious cause muscular blood
flow problems so this would be a cause
potential cause and inflammation
impaired
you know different potential causes for
that bodily weakness that the people are
experiencing the cognitive symptoms
those are a big one the neurological
symptoms the hypersensitivity the this
this is major this is huge
we talked about things that can be going
on directly in the brain infection in
the brain is probably playing a role in
a lot of people there's actually stuff
you know that would make you feel bad
right if there's enough of that going on
that and cause some of these different
things also inflammatory responses
related to that but also related to
other factors in the body also this idea
that your cells aren't using energy well
enough well what if the cells in your
brain also don't process energy well
enough that can also that can also
potentially affect your the the brains
functioning there could be possibly some
direct autoimmune effects may be if
those muscarinic receptor antibodies or
so forth are affecting brain tissue so
there are a variety of things that can
be causing these severe cognitive and
brain related symptoms that are common
to these illnesses also degenerative
effects I am concerned that probably if
we looked at brains over time you know
all this stuff going on they don't they
don't go without damage over time you
know their changes I'm sure that occur
in the brains that are just the result
of kind of the constant beating that
they've taken and so orthostatic
intolerance another major symptom that's
basically symptoms you get with that are
worse with
positions and so multiple potential
explanations for this but the way I look
at it now is I see two major things
number one you can get those circulatory
problems like pots but even if you have
high blood pressures even if you don't
have pots or anything like that you
still have worth of static symptoms and
I think the way I've put it together
it's part of the reason for that is
probably because the brains are already
messed up and and there are they're
going to be more sensitive to pressure
changes than a normal person's brain and
so you're just going to feel you're more
likely to feel it partly just because of
intrinsic problems to the brain and
partly because of circulatory problems
now if we identify a circulatory problem
we can do something about that harder to
do something about those intrinsic
problems in the brain but you can
measure it and depending on the
circumstances say if there's pots or
something like that certain measures to
help with the orthostatic intolerance
may help I use this this frozen popsicle
analogy okay bear with me follow me now
all right so so imagine you've got an
unfrozen frozen popsicle you know and
and you lay it on its side okay
so this represents your body alright and
and if you lay it on the side the fluid
inside that popsicle is this is an
example I'd frequently give the fluid
and the popsicle is evenly laid out
right now what if you'd stand that
popsicle up especially if it doesn't
have a lot of fluid in it mmm look
where's the fluid more there the fluid
pools at the bottom and less at the top
and so look at where your heart is your
heart can only pump as much blood out as
is coming in so if if there's a big
fluid shift your heart's not getting
enough blood what does it do it may
speed up that's a big part of where you
get pots it's all of a sudden going
crazy trying to pump because it's not
getting enough fluid back so what can
you do about it well one thing is you
can squeeze the popsicle at the bottom
right if you squeeze the popsicle at the
bottom what does that do push the fluid
up
and that's kind of concept between like
the waist high compression stockings and
so forth they got to be tight enough to
actually push fluid up them another
thing is you can you can sneekly
do do something else you can add more
fluid to the popsicle right and and that
will also make it pool less and get more
fluid up to the heart level and the way
and that is kind of the hot concept
between a combination of salt and water
sometimes flirted cortisone but it
really depends on the patient like I
said not all patients have this issue so
you've got to determine whether that's
an issue or not before you start doing
you know taking measures like fluid or
cortisone or something like that
pain pain is another issue like I said
not all pay is myalgia although some of
it is and not all male jame come from
the same thing some of it comes from
effects in the brain some of it comes
from tightness some of it comes from
possible direct infection you've got
other connective tissue pain you've got
hyper that really irritable skin
sometimes you've got neuropathic pain
where pain from your nerves being
damaged different kinds of pain you
can't just say I got pain if I'm a
doctor I've got to figure out what kind
of pain are they talking about because
that affects thing so the way I break it
down is two main causes for the pain the
causes that are related to nerve later
problems including problems in the brain
and then tissue based causes so if your
brain is sending a signal down to your
muscles causing some pain or if there's
a problem in the nerves causing pain I
my impression is that these tend to be
more is more responsive a lot of time to
the fibromyalgia type pain medications
if it's in the tissue it seems like they
often seem less responsive to those
things so you got a distinguish is the
pain and the tissue or is it coming from
the nerves so putting it all together I
just I I made this little illustration
and bear with me so I so let's just take
a sample patient and this is kind of
because we've talked about a whole bunch
of different
things how these things all go together
well here's our guide and say they pick
up a virus virus enters mouth from the
food or something you know very
unfortunately and virus starts dividing
and spreading to the body so it may go
to the stomach and start replicating
there but then and it will go to the
lymph node there and then it can go
other places it might go to the heart
and cause myocarditis it got might go to
the muscle and cause muscle aches and
problems it certain of these viruses
will go to the brain in response to the
virus your body makes antibodies some of
those antibodies attack the virus but
they also may attack your own tissue
problem right including in the brain
that in turn will cause potentially if
it's the auto antibody and if this
hypothesis is correct that may cause
some of the energy production problems
in that case your body starts making
antibodies the virus could completely go
away but if those antibodies stay there
and if it's causing your body to have
energy production problems you still got
the the significant weakness then the
virus may get in the nerve and cause
pain it may get in the effects on the
brain may also send signals from the
brain to the to the muscles causing pain
the effects of the virus directly in the
tissue like in the muscle may cause pain
so you see all these things start to
actually there they really are connected
even though they seem like a bunch of
different parts that are and this is
just a simple example it doesn't apply
to every case but but that is just
showing things are connected that way so
whatever that a very interesting thing
is that I've seen you know is it really
seems like once you start to think about
things this way with like Emmy or
chronic fatigue syndrome you start to
see I see in five miles a lot of cases
where
looks like similar processes are going
on the brain infection type of process I
highly suspect in some cases other types
of processes you just might not because
pain is the more prominent but you still
got the other things you might not have
have as much as say the energy
production problem so so what what you
look at and the other thing is that ms
lupus
polymyositis it's an autoimmune disease
of the muscles interesting thing though
it's been connected I believe to
enterovirus so you can get enterovirus
without that autoimmune response get ME
enterovirus with that response and be
diagnosed with polymyositis so there are
a lot of illnesses out there where we
could learn lessons from what we're
learning from these patients so we
really have to challenge the way we look
at illness different individuals you
know you should you know if you've been
if you talk to many people you'll know
that everyone has there's a lot of
similarities but each person has their
own set of issues their own things to
deal with and and and I started I almost
because there's such variety it's been
part of the reason why we've had so
difficulty so much difficulty pinning
down an impending – even pinning down
dying – excuse me diagnosis because
there's really it one thing blends into
the next blends into the next you can't
really draw a line and so I'd kind of
mentioned here one way to look at it
might be to you know the salad bar model
of illness versus the platter model
we're used to having the platter model
of illness and an example would be okay
well here's your type-2 diabetes on a
plate and would you like for a dessert
would you like an mi would you like a
disease or would you like kidney disease
to go with that okay that's kind of how
we're used to looking at el nosotros
in this area there seems to be a lot
more mix-and-match of components mixing
the infection that autoimmune the
different things and one person may have
the infection with say a certain
autoimmune component and another person
may have an infection without but so so
we've got to start thinking about
illness different a different way and if
we looked at it this way I think we'd
have less problem less less difficulties
was just debating over okay how do we
define this or whatever how do we treat
we need to look at that also when we're
developing treatments what we need we
need information to help us diagnose the
illness
I believe that tissue studies would be
really helpful we're talking now a lot
about molecular stuff we need to not
forget there is a role for infection we
need to not forget there are actual
structural changes and other changes
that are going on in the tissue that you
can't just get through looking at
molecules and the cerebrospinal fluid or
the or in the blood we need we need we
need clinical trials of treatments it's
a hugely challenging when you have to do
a lot of your treatment based on hearsay
that's not how medicine works and if we
want doctors to get better involved and
to and it and if we want to be able to
treat people better we need to
understand the treatments well enough
and that means we need clinical trials
of treatments and we already have leads
for clinical trials yes we're going
after the big the big underlying things
but I think we need to think heavily
about clinical trials new
pharmaceuticals we can't just wait for
the drug companies to do that
every single new drug very expensive
takes a long time huge huge burden on
patients pocketbooks hard to get through
insurance and so much of this could be
done a lot of it could be done
– repurposing there are some needs for
new pharmaceuticals but for example say
in our viral treatment but but we need
to look at repurposing drugs so much
more cost-effective it would be quicker
just do the clinical studies let's let's
let's get movement on clinical trials
for treatments when you're treating you
have to kind of break it down kind of
like I did you have to look at the
different components one thing I'll
really point out about treatment I think
it's important as we look to the future
of treatment we can't if if there's an
infection triggering an autoimmune
response we need to consider both if we
just block down the auto try to block
down to autoimmune response without
blocking the trigger we we might be
leading to some problems not effective
so what I'd like to conclude with this
these these illnesses they really they
challenged our minds and they challenged
our hearts that's that's been huge if
you look so much the struggles that
patient have are because number one we
just can't wrap our brains around it is
so hard the other one is it takes an
open heart to listen to someone who you
can't relate to the problems that
they're having exactly you have to be
open to listening to someone and really
understanding what they're saying so it
challenges our minds and hearts I'd like
to thank the baton Horne Center they've
done so much to help me in terms of
understanding this I'd appreciated when
they provided a grant for me to go to
the the meeting last October and one one
last thought that I'd like to end with
so I went to I went to this meeting the
International Association of chronic
fatigue syndrome
and in the meeting in October a very
enlightening meeting but I felt like I'd
kind of the way I do certain things and
I felt like I'd my parents lived there
in Florida and I felt like I'm Sunday I
needed to rather than stay for last day
go back and attend church with my
parents and and and I was very struck
and when I was there one of the songs
that was selected that we sang this was
this was the middle verse and it says I
would be my brother's keeper I would
learn the healers heart to the wounded
and the weary I would show a gentle
heart and you know I don't know what
could have been more apropos to the
situation then than that that's just
where I was at I was learning the
healers art I was learning about
treating those who are wounded and
wearing and we've got to remember the
heart of it we've got to remember the
heart of it and also place faith I think
that there's there's there's a higher
influence there you know and in all this
and and so I'd like to close with that I
appreciate you all coming
I welcome to take questions if you could
when you ask your question rather than
sharing personal information if you
could ask it as a general question for
the whole audience but I'd be happy to
take questions and thank you for for
coming so we have the microphone here
talk about there with FEMA is that yes
yes rituximab is available in the US
that's a good thing
the problems are number one it's an
expensive treatment still and number two
it is a pretty powerful treatment blocks
down your immune system and and it's
really hard to tell who's going to be
helped and who's not so number one it
might be out of pocket because your
insurance may look at a you know I'm
saying you and in the collective sense a
person's insurance may look at it is
being an investigational which which it
is and and and and it is not without its
potential problems but it is available
and some people have been on rituximab
but they're doing trials in Norway the
ones who discovered it and and I was got
to talk to one of them in the conference
and I understand because I understand
they're actually trying to this is great
this is what happens in like the
non-food pharmaceutical company trial
that might not have happened there but
they're really trying to hone it down to
who's gonna respond and how can we test
to determine who's going to be the best
candidate but yet yes it is available in
the US
do you know what would cause of
regulation of mhc1 receptors on muscle
cells in the case what would cause up
regulation of MHC 1 receptors on muscle
cells no I don't you know the MHC
receptors are the major
histocompatibility complex are involved
in in presenting antigens to to the
immune system to kind of help you
recognize what's going on inside the
cell and see if Friend or Foe but I
should have made the caveat you're
probably going to have a lot of
questions at that level of granularity
that I won't be able to answer and I'm
sorry okay good excellent question and
and what inflammation really does
inflammation you got a reason for
inflammation you know our bodies were
designed a certain way they you know
came about a certain way and
inflammations got the purpose
so what inflammation is is your body's
way of responding to attacks on it and
hopefully fixing itself and repairing
itself getting rid of the the virus the
bacteria the injury whatever
inflammation is very important but the
problem is is that inflammation also
doesn't makes you not feel good and it
can have some side effects so we have to
determine where is inflammation being
helpful and when is it not being helpful
so an infection can cause inflammation
and if it's just that kind of latent
infection that's sitting there well it
may just be causing an ongoing
inflammation and the inflammation may
just be making you feel worse so in fact
information is a response to infections
that helps get rid of it but it also is
a result of infection
that can cause other problems is it
possible to volunteer for a trial that's
a better question for the Bateman Horne
Center could I do you all have an answer
to that
so the Bateman orange Center is
currently involved in trial work for
clinical purposes of all I should say
studies related to fibromyalgia and we
are hoping in the near future to be able
to engage in pharmaceutical trials for
some things related to a me/cfs and if
you may be aware of the new NIH money
that has come to support additional
research for mecfs it's the largest
amount of money that has been injected
into the system there are three major
grants that were given and they've been
art centers that collaborator on two of
them and so our need for individuals to
be willing to participate particularly
those who have our considered newly
onset patients in the past three years
produces we'd love to engage here at the
center as well and that you could reach
out to the Magnum Arts Center either
online or through our portal or call the
clinic to learn more about those
research opportunities thank you
any other questions there's an
international question anything
available in Australia well it kind of
it kind of depends on on what you're
looking for whether it's a medicine or
there are doctors in Australia who focus
on this illness medicine like rituximab
I'd I would imagine would be available
but probably similar issue to what
you've have faced here in the u.s. some
of the other treatments like treatments
of pots if that's present like I said
there's there there's no good overall
curative drugs for mecfs there are a lot
of supportive drugs and a lot of those
are available things like the two pots
treatments that I was mentioning but you
have there are doctors there and you
have to find a doctor that is is
knowledgeable now that's that's the
trick so much doctor holidays Express
one of the challenges we have not only
educating the professional world and
having more providers who are aware of
the standards that are now established
and how to make an appropriate diagnosis
and start to establish some treatment
routines one of the things that maple
horn Center is doing right now is a
pretty intense collaboration with as
many medical groups as we can to help
educate other providers locally there
are some and then online starting to
help Rossio me education for the
providers in state as well as outside
the state of Utah
dr. Bateman will be involved with a
group of individuals the first of the
year that will bring people who have
treated mecfs from around the country
and in fact him around the world we've
got a couple of Mitchell's West River
participating to try to bring together
the body of experience from individuals
who have had clinical time dealing with
this over the past you know 20 or 30
years and to capture that and to provide
additional resources to providers about
that collective and aggregated
experience so lots of things to watch
for the pavement warrant Center also now
has rolled out a series of educational
programs to deal with the detail of a
lot of the things that dr. holidays
talked about today but there's one topic
that I think is really important and
that is not only have to get at the
right diagnosis but it's how to have an
effective conversation with your
provider and so if you live in an area
where you don't feel like you have a
primary care provider who can help you
we hope to be able to make this online
at some point we're doing in-state
classes on this now but it helps prepare
the patient and empowers the patient to
have an effective conversation with
their provider and what are the things
you need to take to help that provider
be a little better educated and prepared
for the conversation that you would like
them to have with you okay there was
just one last last question there's a
bit of a debate on whether CFS patients
to be on an organ donor list or blood
donor that's that's
this is totally winging it so so yeah
that that's that's an excellent question
and I guess the best answer would be I
can't really speak to that but I would
be concerned I would have my concerns
just kind of like what you would if if
you had anyone else where where you look
we're looking at the potential of
chronic infectious illness that that's
got to be the concern there as well so a
good question
not it not a good answer well listen
thank you dr. Holliday we appreciate so
much thank you very much for your time
and visit our website as well as join us
next month for our education thank you
for your time

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