ME/CFS Research Update: November 2019 Bedside Chat with Ben H. and Ron Davis

Sly Saint · Dec 10, 2019

https://www.youtube.com/watch?v=vcYWdQbe1mY

thanks to @Ben H

eta: youtube generated transcript pt 1

01:11
them so um I guess to start it off I
01:14
just wanted to say to talk about the
01:18
symposium so obviously we had the OMF
01:20
third annual symposium that was early
01:25
September September the 7th I think
01:27
wasn't it right and I just wanted your
01:31
thoughts on how it all went really just
01:33
just general just general force any
01:36
signs that were different to last year
01:38
exception like that we're making
01:44
progress we had some new people gift
01:47
talks I did bring in some engineers to
01:55
work on some of the problems and now
01:58
we're trying to sort out the the
02:01
differences that they find versus the
02:03
differences that we found earlier and so
02:06
we're we're in the midst of exploring
02:09
that earlier we found deformability and
02:13
the new device doesn't see it so we're
02:17
looking at the differences that were
02:18
present one of our concern is that
02:22
they're putting the Ritz Hills in two
02:25
phosphate buffered saline and it may
02:29
have to stay in the plasma so they're
02:32
setting up new experiments to see if
02:34
that will make a difference we're
02:35
looking at the just a detail sometimes
02:38
of these techniques very subtle things
02:41
that you do make it work or not work and
02:44
you don't actually know why yeah it is a
02:47
difficult time to transfer the
02:50
technology I've got a lot of experience
02:53
that and I'm also a lot of companies
02:54
have experience or the technology and
03:00
they try to give everything in all the
03:02
details but there are certain things
03:04
that change yeah I think that's a common
03:11
problem but I've told the community that
03:16
when we have these symposium we're going
03:17
to give you the very latest up-to-date
03:20
things that we're doing this is what's
03:22
happening in the lab right now and sort
03:25
of full disclosure and we're not waiting
03:29
until we have a publication out and then
03:31
we can tell you about the publication in
03:36
my experience doing these complex things
03:38
it usually takes two to three years
03:41
before when you start something before
03:44
you actually have the paper up I'm my
03:47
feeling is that just way too long and
03:51
NIH likes it likes the papers I do too
03:55
and I think we can communicate things
03:57
much yeah I remember you I think saying
04:02
last time or maybe when we've talked off
04:06
like when it's not being recorded about
04:08
how I mean it's quite obvious when you
04:12
think about it but it's one of those
04:14
things that sometimes you do have to
04:16
think about it is like for example the
04:20
media that they're like the medium sorry
04:23
that the cells are in can really affect
04:27
results of the experiments and sometimes
04:30
things can be assumed about the media
04:33
medium like what Evers added in as a
04:35
buffer etc or anything like that and
04:38
that may have changed from one year to
04:41
the next and that can actually obviously
04:44
like just you're talking about can it
04:46
affect the results and it's it's quite a
04:49
hard thing to pinpoint down because it's
04:50
obviously something that could go
04:52
unnoticed if you weren't paying close
04:55
attention so if we actually do develop a
05:02
technology thing we want to export we
05:05
often do a lot of troubleshooting we
05:08
look at changes in the protocol changes
05:13
in the concentrations to see if there's
05:15
anything that's very sensitive to the
05:17
technology yes we haven't begun to do
05:20
that with the metabolic trap and I'm
05:24
sorry not the yeah we're worried that it
05:33
probably does have some sensitivities
05:36
but we'll figure that out okay the
05:43
problem is you may pick a condition that
05:44
is just right at the edge of having it
05:48
work and if you make up the solutions
05:50
although incorrect and it doesn't work
05:54
we want to find out if that's going to
05:56
be the case but right now it's not ready
05:59
for export but we're working on trying
06:02
to get it so at least it could be
06:03
exported to the same to the community
06:05
that would be the first pass because
06:08
they'll be little easier for them to
06:11
take on something technically quite
06:13
difficult and then later you go to
06:17
testing laboratories and they usually is
06:21
fairly inexperienced people it has to be
06:27
very routine and simple yes I mean that
06:32
actually follows on quite nicely because
06:34
by far and away I'll ask the questions
06:38
like from from the other patients at the
06:40
end but
06:41
fine away the biggest question by just
06:45
by by a magnitude of I don't know why
06:48
was basically what's in the blood or
06:52
what isn't in the blood or what thing
06:54
what multiple things are in the blood to
06:56
cause this impedance signal I think
06:58
people were and obviously myself and
07:02
everyone is because it sounds very
07:04
simple it sounds like a very simple
07:06
thing to you know something's in the
07:08
blood what's causing this thing it's and
07:11
it's obviously incredibly kind of
07:14
symbolic in a way because I think
07:16
there's been some diagrams going around
07:18
on Twitter that say like any cells in
07:22
healthy patients blood and they're okay
07:25
and then you have hope I've got this to
07:27
the right way around with my cognition
07:28
but then you've got obviously healthy
07:32
cells in any patient blood and they have
07:35
that same or very similar impedance
07:37
measurement I don't know if you can
07:40
clarify that's actually fairly
07:42
interesting because my patient and then
07:48
take the cells out and put it into
07:50
healthy plasma lose the signal so that
07:55
means that the plasma from the patients
07:58
have to be in contact with the cell at
08:01
all times
08:02
yes it's not likely you treat the cells
08:06
and now they're stuck in this pattern
08:08
they go out of that pattern very quickly
08:11
which raises some of the issues with
08:13
people using a seahorse instrument and
08:15
trying to compare it because the
08:18
seahorse instrument no it's routinely
08:19
done is not done in plasma it's done in
08:22
buffer they may not see what we're
08:27
seeing because of that we've tried to
08:31
run it in very a very small amount of
08:39
that's why they run buffer okay can can
08:43
you can you just give a I guess a brief
08:46
kind of explanation of why it's not
08:48
quite so simple that it's just something
08:50
in the blood why it's quite hard to find
08:53
out what that may be
08:54
or what those things may be I think we
08:58
can figure it out it's just very
09:01
difficult with our current set up
09:05
because we have a fairly thirty thousand
09:09
dollar instrument that can only do two
09:11
samples at a time and it takes several
09:14
hours to do the setup and run and what
09:18
you would be doing is fractionating the
09:21
plasma with different techniques and now
09:24
you would say fractionated into ten
09:26
fractions but now you're going to
09:27
measure all ten fractions so the problem
09:31
is when we could do two of the finishes
09:33
and then we could get a patient to come
09:36
in the next day cuz they should we
09:38
shouldn't ask the same patient to get
09:39
blood and so we have a different patient
09:42
to do another two fractions how do we
09:46
interpret that it's just not going to do
09:48
this experiment and it would take a lot
09:51
of time and effort the way to do this is
09:53
to change the electronics and the way
09:56
the chips are also all done and be able
09:59
to hundred at a time so it doesn't take
10:04
much blood for this one patient donation
10:08
would be able to do a hundred samples
10:09
and so now you could do the
10:12
fractionation and back do quite a few
10:15
different fractionation so I wrote it
10:17
all at the same time so that's a better
10:20
way to figure this out it's a kind of
10:23
funding and scalability issue which are
10:26
kind of intrinsically linked obviously
10:35
okay that it will because he's a young
10:39
investigator and there's no different
10:41
preference for that but the proposal is
10:43
pretty complicated in the Sin City has
10:46
to rebuild these electronics for this
10:56
okay that's interesting that's obviously
11:00
yeah brahim is obviously the person who
11:04
is he's the engineer behind the
11:08
cell impedance device isn't he no no
11:15
have I got that completely wrong she
11:21
started in San Jose State that's
11:23
continuing but so Rahim
11:28
so the initial impedance device was that
11:31
not cannot constructed by Rahim no yes
11:54
yeah he does come up once a week but he
12:01
just delivered on Friday a new batch of
12:04
chips that was his prime
12:06
start at the new location getting a
12:11
graduate student getting a graduate
12:13
student trained to fabricate we haven't
12:16
yet tested them so I'm hoping they will
12:18
work yeah I think I don't then they have
12:21
to start over make another batch but
12:24
that new batch will help us do a lot of
12:27
experiments we'll do the ones that where
12:29
we can get a good where we can get a
12:30
good experiment just using one or two
12:33
chips yes with our current with our
12:36
current device there's a number of
12:37
things that we can do okay that make
12:41
sense I thought I was going mad there
12:42
for a second I'm glad that I yeah that
12:45
makes sense now
Click to expand...

Sly Saint · Dec 10, 2019

youtube generated transcript pt 2

12:45
um yeah okay so another thing that was I
12:52
think this was with from upsala the
12:57
center there that's that you guys are
13:00
working with because now you've
13:01
obviously got Stanford you've got
13:03
Harvard and you've got Uppsala
13:06
University yes so you've got three
13:10
centers which are working together which
13:13
i think is quite incredible really and a
13:16
huge step forwards and one of the things
13:18
i picked up from that was really
13:21
interesting
13:23
that I think it was it was them that
13:26
we're doing this which was the
13:29
proteomics of neuro inflammation markers
13:32
in patients Auto antibodies autoimmunity
13:36
and steroid and thyroid hormone
13:40
regulation there I think they're also
13:44
doing
13:44
microglia imaging I'm reading this off
13:47
my little note list the country so our
13:57
working group okay and we do have to
14:01
talk with him because he's doing some
14:02
things that we're also doing and we just
14:06
don't want duplication of effort
14:08
validation of results is valuable so it
14:12
has to be along those lines and but also
14:16
we haven't done any as final thought and
14:19
he said an expert in that as well
14:21
so yeah there are a number of
14:23
experiments that I think should be done
14:25
well either ship the technology and to
14:28
him or evil ships ship samples to us
14:31
probably the shipping to us will work
14:33
because most of these I'd like to look
14:37
at for any presence of any viruses or a
14:40
poor bacteria we would do that by
14:45
looking for DNA its DNA is very stable
14:47
can be frozen no it's not a problem they
14:51
will send in freezing canisters okay
15:00
well they will the freezing of I mean
15:03
obviously it will in some way but were
15:05
the for that I'm presuming obviously for
15:08
the purpose of what you want it for the
15:09
freezing of the samples won't affect the
15:12
results in terms of because obviously I
15:15
know for certain things you need fresh
15:18
plasma for doing something sort of
15:22
biological which is a biological assay
15:26
okay yeah freezing can be a real problem
15:29
we have good results with freezing you
15:32
still get a weak signal but it's
15:35
it's not trustworthy okay so we don't
15:38
want to use frozen samples but DNA
15:41
analysis is we have a lot of expertise
15:43
not the world has a lot of experience
15:46
not just us yeah about handling do DNA
15:50
is very stable but RNA is also stable so
15:53
we will look at the RNA and the DNA yeah
15:56
just something that needs to be done we
15:58
have the technology to readily do it so
16:01
on that front
16:04
we're setting up to do RNA analysis so
16:07
we can look at the RNA viruses and
16:11
that's a project that isn't funded in
16:14
fact none of the stuff that kid Dongshan
16:16
has been doing with DNA analysis and
16:18
looking for viruses is a specific
16:23
project that's funded uh-huh
16:26
and this is a good time to make
16:28
donations because open medicine
16:31
foundation is now having their triple
16:33
Tuesday that makes your your your
16:43
donation more effective I wish for such
16:46
work so expensive but it is and we are
16:52
putting in another grant on the 11th of
16:55
November and we're gonna have at least
16:59
one or two grants every every NIH round
17:02
okay and the best way if they don't want
17:06
us to keep so many grants is to give us
17:08
a few yeah I mean again that's yeah it's
17:13
triple Tuesday at the moment so
17:15
obviously every if someone gives one
17:19
dollar
17:19
err OMF get three dollars if someone
17:21
gives five dollars OMF get 15 etc and so
17:24
on and I think the aim this time is to
17:28
to raise a million dollars which is
17:30
obviously a lot of money a lot of money
17:34
but it's it's also at the same time it's
17:36
quite easy I think to forget that so
17:39
much work so far has been self funded or
17:42
funded by OMF standards and I was
17:46
looking on their website the other day
17:48
obviously
17:48
patient advocate and a volunteer but I'm
17:52
a severe patient first and foremost so
17:55
I'm interested in the organization and
17:58
how much money people of raising and how
18:01
much money that organization is raising
18:02
and I think it would said something
18:04
close to 20 million in five years maybe
18:08
which i think is quite astounding amount
18:11
of money and it's enabled you you guys
18:14
and other now the other
18:18
Harvard and Uppsala to be able to
18:21
continue researching so with triple
18:24
Tuesday obviously being a focus at the
18:27
moment that money goes so much further
18:30
and I guess we're very fortunate in to
18:34
have those those donors who were willing
18:36
to to match and provide those extra
18:39
funds so hopefully if people support the
18:44
cause don't though they'll donate and
18:48
we'll get there faster until any NIH
18:52
pull their finger out basically so yes
18:59
we have a we're setting up into
19:02
collaboration which is an area that I've
19:05
been wanting to get into and that is
19:06
he's a neurologist at Stanford when he's
19:12
particularly of interest to us he has a
19:14
lot of experience with the effect of
19:18
plasma and materials in the plasma that
19:22
affects the brain okay since we see
19:26
affects the plasma we would like to try
19:30
to explore that and he's very interested
19:32
in doing it we don't really have a
19:34
budget for that we don't know how
19:36
expensive it's going to be that
19:39
hopefully will be another project that
19:42
could be very beneficial we don't have
19:45
to learn a neurological effects and it
19:48
would be wonderful if some of that could
19:50
be modified by things in the plasma
19:53
so it's either something bad in the
19:55
plasma that's making things worse or it
19:58
could be the absence of something good
19:59
both of those were that yeah that leads
20:05
really nicely onto actually one of the
20:09
things I'd noted down which is one of
20:12
the compounds that was really low in
20:14
patience I hope I'm pronouncing this
20:16
right I have read this some of the about
20:18
this compound before but it's in Dali
20:21
propria Nate yes it's not a very
20:27
complicated compound you can actually
20:29
buy it but it's not not clear that it's
20:31
safe to take good because it's made by
20:33
chemical manufacturer yeah
20:36
and there is a there is a company that's
20:39
exploring that as a as a supplement for
20:46
brain protection it's in clinical trials
20:50
at the moment the major thing we need to
20:53
find out is whether the preparations
20:56
they've made are safe and if it is then
20:59
we would like to try to do a
21:01
collaboration with them we haven't
21:03
talked to them yet they have to get
21:06
results before we can do that but we're
21:08
very willing to work with industry as
21:10
well as academics yeah I mean reading
21:17
about it was very interesting because
21:18
obviously just as a bit of background if
21:21
people aren't familiar with that
21:23
compound it's it's a it's a neuro
21:27
protect protective made by species of
21:30
Clostridium bacteria in the gut isn't it
21:33
and so with all the gut issues we have
21:37
and some of the findings I think by
21:40
Hanson and just I mean there's a lot of
21:42
findings now evidence of dysbiosis and
21:46
that various things like that I think
21:49
it's a very interesting compound in
21:54
itself and I think it's it's one I might
21:56
be wrong on this and you can correct me
21:59
but I think it's a compound similar to
22:01
melatonin in the sense that I don't I
22:04
think it's an antioxidant but I don't
22:06
think it's first of all a pro-oxidant I
22:09
think it's just an ant like an
22:11
antioxidant like an innate aunty on
22:13
and it functions as an innate
22:15
antioxidant watching Bill effects yeah
22:24
explain why fecal transplants or helping
22:28
people yes because although severe
22:32
patients have low levels yeah by putting
22:36
the organism back in what the fecal
22:39
transplants going to be done correctly
22:40
because if it's a close-fitting miss
22:43
killed by oxygen so I can imagine some
22:46
time not working because you exposed the
22:50
transplant to too much oxygen so it
22:54
would be it might be simpler and cheaper
22:57
as you simply get the compound and take
23:01
it as a pill since it's made by the
23:03
bacteria in the gut putting it back the
23:05
compound and the gut should be fine
23:08
isn't going to get destroyed because
23:10
it's not destroyed already yeah that's
23:15
gonna take a while before that's
23:18
permanent but we are working on that so
23:22
right now we're putting a little bit of
23:24
a heavy focus on kind of trying to come
23:26
up with some ideas that could help the
23:29
patients as we try to figure out what's
23:31
causing the disease yeah okay that's
23:35
yeah that's really interesting this one
23:37
that really kind of stood out to me I
23:39
know it had been mentioned briefly
23:41
before but it was mentioned again and
23:43
that I found that I personally I found
23:46
it very interesting with having a lot of
23:48
guys shoes myself and talking to other
23:50
patients yeah I found that one very
23:53
interesting
Click to expand...

Sly Saint · Dec 10, 2019

pt3 [includes stuff re CCI, and mark davis and t-cells]

23:58
I mean it's a big thing recently I think
24:03
because of a Jen Brea that a guy called
24:10
Jeff who has a website called mechanical
24:13
basis and also another patient called
24:15
Matty is CCI so crania cervical
24:19
instability which I'm going to do a very
24:24
bad job of explaining because of having
24:26
a foggy brain but
24:27
it's essentially the laxity of ligaments
24:32
and pathology of pathology of basically
24:41
connective tissue and ligaments
24:42
affecting the brain stem and various
24:47
various organs in in that area that's
24:51
not the best explanation at all but I
24:55
think a lot of people know about it
24:57
already and it's it's obviously if if
25:02
the brain stem is compressed various
25:05
yeah I mean that's gonna be truly not
25:09
very good for obvious reasons but having
25:14
heard of these like success stories that
25:18
gem Bayer has had and Jeff and Matt
25:22
Matti I just wonder what your thoughts
25:25
on CCI are obviously is it from a
25:29
patient perspective I kind of want every
25:31
I mean these these stories are quite
25:32
incredible to me I don't I don't
25:37
understand in terms of in terms of
25:41
there's there's some theories out there
25:43
and I know Jim Bray is working on some
25:45
and some have been discussed on forums
25:47
before on why the issues have been
25:51
alleviated for some people who have had
25:54
surgery it's a small number at the
25:56
moment but it's fascinating to me that
26:00
those that someone diagnosed with ICC
26:05
mecfs fulfilling all of the criteria
26:08
having essentially a structural issue
26:11
resolving most of their symptoms for -
26:14
for the two people I know and I think
26:18
the other person is resolved they've
26:21
gone from severe to moderate which is a
26:23
huge step up I just wondered your
26:28
thoughts on if what your thoughts on CCI
26:31
are if you're investigating it and yeah
26:36
just your general
26:38
ponderings wrong well I talked to a
26:43
number of physicians that specialize in
26:45
mecfs their thoughts are that it's
26:51
probably a fraction of the patients
26:54
really have that problem but it's
26:56
probably not all and so that's one of
26:59
the confounding issues then if it's not
27:03
all and why doesn't what are the two
27:05
populations seem to be exactly the same
27:07
yeah so that's a bit of an unexplained
27:11
one of the things that is also
27:13
consistent with the CC is that we find
27:18
that in the severe patients some of the
27:22
highest metabolites in the blood are
27:24
lysine and hydroxyproline those are
27:29
major constituents of of the connective
27:32
tissue in the collagen yeah that's that
27:35
would be consistent with any degradation
27:37
of the collagen that's not proof that
27:40
that's the case because it could be
27:43
almost the opposite that because the
27:46
collagen is weak
27:48
the body is actually revving up the
27:51
production of those molecules yes they
27:54
used a new synthesis however it just
27:59
says that that is consistent with
28:01
connective tissue issues we see the
28:05
building blocks higher we have to sort
28:08
that out we have some looking at we're
28:12
now doing a lot of pathway analysis a
28:14
lot of fair is really good at there yeah
28:16
we're measuring a number of things in
28:19
the pathways and are finding places
28:22
where we could stimulate the degradation
28:25
or inhibit the synthesis you know that's
28:29
going to be explored a lot more so we do
28:33
have a pretty big effort on pathway
28:36
analysis and we're trying to get all the
28:39
different components in the pathways to
28:42
be quantitated that's going to be
28:45
expensive because many of them nobody
28:48
does it and so we're going to have to
28:49
set up special
28:51
tools yeah yeah yeah I mean you
28:57
literally asked answered my next
28:58
question was the link about EDS
29:01
hydroxyproline excretion being high and
29:05
possibly indicating the degradation of
29:08
collagen so that's really helpful I
29:12
think I don't know if this is still the
29:14
case but I did read I think it popped up
29:19
somewhere that you guys were looking for
29:21
people before the people who were
29:24
potentially having CC eye surgery and
29:28
after blood after four blood samples is
29:31
that still okay and we'll do that look
29:34
at the metabolomic says we'll get their
29:37
sequence and we'll do the nano needle
29:39
assays I don't know the timing of that
29:43
why we have a found a few patients some
29:46
of them are you know local so getting
29:51
their sample may be a little tricky but
29:55
we are capable of traveling to patients
29:58
we've done that a couple of times when
30:01
we've actually gone to patients and we
30:05
have most of the equipment that we need
30:07
to process a bit portable yeah thinking
30:11
of equipping a van with all the
30:16
equipment that we need so that we can
30:18
actually go patients that are unable to
30:23
come to us yeah all right that sounds
30:30
that sounds fantastic
30:32
very cool equipping a van appealing to
30:37
appeal to my geek side yeah so okay so
30:46
is that just to clarify is that still
30:49
ongoing
30:49
are you still looking for potential
30:52
patients is that something that if
30:54
someone's having that operation for
30:56
whatever reason you still want you would
31:00
want to be in contact with them yes okay
31:05
you know what is doing this in Europe
31:07
are gonna be much more difficult yeah
31:11
the closer they are to us the less
31:14
expensive it will be
31:15
yeah sometimes those patients actually
31:18
come to the Bay Area because we know a
31:20
number of physicians that specialize in
31:23
mecfs
31:24
so yeah they come here to see the doctor
31:30
maybe before work yes
31:35
yeah that makes sense okay that's that's
31:39
good
31:41
so next mark Davis and T cells so that
31:49
was one thing that was in the symposium
31:54
and patients were also came up a lot in
31:58
for patient questions basically people
32:01
wanted to know the progress but
32:03
obviously I think in the symposium you
32:05
mentioned or it was mentioned sorry that
32:09
the T cells the T cells the immune T
32:13
cells were reacting but you've now since
32:15
found out they weren't reacting anymore
32:17
than control patient cells were but you
32:22
don't know whether they're reacting to
32:23
something different and that's what
32:25
you're finding trying to find out next I
32:27
don't know if that's okay so he wasn't
32:35
able to come to the to be at this
32:38
symposium the work isn't complete my
32:45
understanding of making some progress in
32:47
that area to find out what they're
32:49
reacting to the initial thing that
32:53
started this whole project is we had a
32:56
fairly small number of patients and
32:58
controls and the patients had a lot more
33:03
reaction and the healthy controls since
33:06
then we've done a lot a lot of patience
33:08
and a lot of healthy controls and now
33:12
the difference doesn't look so great we
33:13
find some healthy controls that have a
33:16
lot of reaction
33:17
maybe they just had a cold or something
33:20
and then the recent past and we've also
33:24
found patients that have almost no
33:26
t-cell reactivity so the level of
33:30
reactivity is not going to be a good
33:32
indicator so the question then is that's
33:35
why we have mark working on this project
33:37
to look at what may be what they're
33:40
reacting to it's very important to try
33:43
to figure out if there is a pathogen
33:46
because in most cases if there is a
33:48
passage and we know how to get rid of it
33:51
yes and then we know how to an assay to
33:57
see if it is gone so that's why it's so
34:00
important to keep searching for a
34:02
pathogen all the indicators are would be
34:07
consistent with a presence of a
34:09
persistent pathogen just name one the
34:15
disease sleeping sickness in Africa if
34:18
you look at the symptoms that the
34:19
patients have they're pretty
34:21
indistinguishable from any CFS
34:24
they call a sleeping sickness because
34:27
they switch their light day/night cycle
34:31
which a lot of patients do as well yeah
34:35
I look for in it's a Trypanosoma and
34:38
we've searched a number of samples for
34:42
Trypanosoma and we're doing a broad
34:47
search for trypanosomes all the ones
34:48
that have been discovered so far looking
34:51
for things that are conserved sequences
34:53
in them so that even if it were an
34:56
unrelated to been its own we do see we
35:02
don't just do one probe we do eight to
35:05
fourteen different probes each organism
35:08
so all we need is one of them to work so
35:12
it's a pretty good assay it may not be a
35:18
trousseau yes I mean I one thing that
35:22
that's often brought up and is I'm
35:25
really interested in to his office is
35:28
enteroviruses
35:31
and things like Coxsackie that may
35:35
Harbor themselves in the gut and various
35:37
things like that but again if you're
35:39
doing RNA analysis that should be taken
35:45
care of well it should be it's a little
35:49
more complicated because RNA is not
35:51
nearly stable is d anything yeah we hang
35:54
around for nearly as long and we'll have
35:57
to develop some good healthy you know
35:59
some good controls on that there is some
36:02
experience in it so it's not without any
36:05
experience you certainly can find that
36:08
when someone has an infection with those
36:11
viruses so we'll do all those kind of
36:19
controls to make sure that where we
36:21
actually can't see that we're also you
36:24
know we also take seriously with
36:26
patients right into whistle what about
36:28
this or what about that
36:30
of course many patients have worried
36:32
about the intra viruses and we'd
36:35
certainly take that seriously that needs
36:38
to be looked at it's just the
36:39
technicality of doing a good job of it
36:43
yes so that there has been a patient
36:46
that has mentioned possibility of a
36:49
nematode that's a bit of a tough one
36:56
because that's very difficult to get the
36:58
DNA out that we know how to do that I
37:02
think getting them we will probably
37:03
explore that as well anything that's
37:07
kind of as an organism could be the
37:10
cause of this yeah that makes sense
37:16
that's good to hear searching we really
37:28
need to publish the negative results
37:30
somehow because it's important to know
37:32
what you look for yeah yeah and the
37:37
methods involved as well it's just it's
37:39
just so important to record
37:42
to make sure that that's not the cause
37:45
because you could probably cure it if
37:47
you think if they figure that out yeah
37:50
and if you couldn't it would put a big
37:51
driving force for industries and develop
37:54
drugs that would kill those organisms
37:56
yeah yeah um I think you also it was
38:02
also mentioned that you were testing for
38:03
mycotoxins and mold I think that you I
38:07
think you might know a guy called Erik
38:09
Johnson
38:10
yeah he's fair visited here we've had
38:15
people go to his we haven't started
38:20
anything I gotta I gotta find the right
38:22
people sometimes you can't just start a
38:26
project you really have to have somebody
38:28
that's really an expert in that area
38:32
because you don't want to reinvent all
38:35
the different methods and so forth that
38:37
are out there it's a lot cheaper and
38:40
faster if you can find the right person
38:42
so we person for for doing that and
38:48
that's a project that needs funding as
38:50
well yeah I was gonna say it can't just
38:53
depend on any age because they will not
38:55
fund anything that you haven't already
38:57
done yes it creates a huge problem when
39:02
you want to start something new they're
39:04
just there's no mechanism for doing it
39:07
at NIH that's why people when they start
39:10
a research program often do that same
39:12
level research their entire career
39:14
because that's so difficult to switch
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ME/CFS Research Update: November 2019 Bedside Chat with Ben H. and Ron Davis

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ME/CFS Research Update: November 2019 Bedside Chat with Ben H. and Ron Davis

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