Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

Here is the auto generated transcript for the Ron Davis section from YouTube for those unable to watch. Sorry that I'm not up to cleaning it up
33:23
our next two speakers
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um need they don't need much of an
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introduction you all know them well in
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our community dr. Ron Davis and Janet
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Defoe are caregivers to their son
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Whitney and they are longtime Emmie
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research advocates dr. Ron Davis is
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director of Stanford genome Technology
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Center at Stanford University
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thank you that's not me
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[Laughter]
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I'm in focusing on on conducting
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research into this disease and also
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trying to get other people to initiate
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research this is weird because somebody
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else's picture is up there okay I think
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the rest of us can see you yeah I think
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you're out right
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thank you it's important it's very
34:27
important to do the research because it
34:30
will give us a molecular understanding
34:32
of the disease and the hope is by having
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a detailed understanding of what's going
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in the body and there's a lot that goes
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on in the body we will come up with
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ideas that will lead to a treatment a
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lot of the efforts to treat this disease
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have been mostly trial and error in most
34:51
the air and I think we can do a lot
34:54
better if we had an understanding of the
34:55
disease my hope and I am really heavily
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focused on this I would like to try to
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figure out how to cure it under the
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disease in order to cure it I think we
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have to find the primary cause and not
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just some of the symptoms and so that's
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our biggest deep dive into the
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and into them like in underpinnings of
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this disease so we have a program that
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looks at trying to figure out a good
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diagnostic as well as using the
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molecular understanding to develop
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treatments we are starting to do some
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clinical trials now some possibilities
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those are underway
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they've been hold up a little bit
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because of the the Cova 19 pandemic we
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had also then first like to get a cure
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and also possibly by prevention so one
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of the things we did discover was that
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there is a potential diagnostic and that
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is using something called the nano
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needle which is electronic device that
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looks at the electronic behavior of
36:03
cells under stress and that has worked
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in over 50 patients I'll show that
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signal none of the patients fail to show
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it and no healthy controls show the
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signal so it's a it's a very good
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measure whether other diseases will show
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that we don't yet know and that's
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actually a very difficult thing to to do
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because there's a lot of diseases the
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next phase of that project is to scale
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it up so that we can do lots of
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simultaneous tests and that requires
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changing the electronics the electronics
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that we're using is a commercial device
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as totally insufficient for what we need
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to do and so we have to make a new
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device that can do a hundred samples at
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a time that circuit has been designed by
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Rahim who is the original founder of
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this methodology he sent a design for
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fabrication one to China and one to a US
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lab unfortunately both of those labs are
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either way behind because of the
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pandemic or they're closed down so
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hopefully we will get that when things
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open up a bit either in China or they
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you
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and that will be in the next phase where
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we can do a lot more testing and we want
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to use that to try to see if we can find
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drugs that will alter the Nano needle
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assay we also have been looking very
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deeply into genetics as well as
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metabolomics because those give us a big
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picture of what's going on in the body
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it's hard to do human because we can't
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go in and sample any tissue we want then
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we'd love to have some brain samples but
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I have no volunteers and so we have to
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take what cells we can get without being
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invasive in the patient so to solve that
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problem we are now taking cells from
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blood cells from patients which is non
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invasive and converting them to other
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cell types and hopefully that will give
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us a to do research on other other types
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of cells including brain cells so the
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genetics has pointed us in the direction
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that it may be involved the tryptophan
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metabolism to Canora knee and that's
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because all of the patients that we've
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done in the 77 patients with genetic
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analysis all have the mutation in a gene
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called I do - that's unusual and that
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suggests that that pathway probably is
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involved somehow in the in this disease
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and so we've come up with a hypothesis
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is called the metabolic trap and what
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we're trying to do now is to test that
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trap we initially started out using
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cells from patients that was very
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difficult because we could get only a
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few cells and so the signals were very
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low and we couldn't be sure of the
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results so we've switched now to doing
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cultured cells those take a long time to
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do all this conversion and make
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different cell types that it now gives
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us an abundant amount of material also
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because we have a lot more material we
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don't have to use a very expensive mass
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spectrometer which is very difficult to
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access because everybody wants to use it
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and we can simply use something called
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an HPLC column of which we have an
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expert in that field and we can run up
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do a run every day so that will speed up
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things as soon as we get the the cells
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we have other models that we would like
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to follow and the other important issue
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is the fact that this copán 19 pandemic
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is an opportunity to actually see
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patients that have come down with a
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viral infection convert to mecfs and i
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suspect that many of the patients that
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have had this disease will do that
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conversion and so we've set up a
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collaboration with our other
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collaborative research centers supported
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by the open medicine foundation to
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conduct a collaborative effort
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throughout the world to collect samples
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and look at them as they do the
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conversion and we'll this will be a very
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deep dive so there's been a project
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initiative here at Stanford with many
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many faculty members interested in kovin
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19 this is a great opportunity to also
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teach them about mecfs so we're going to
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do this collaboratively at where all the
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data is shared even some of the local
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companies have pitched in and said they
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will do their analysis for free and so
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this will be a very very large data
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collection of looking at the koba 19
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infection and then following that and
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seeing if if patients actually convert
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and if we can see what happens in that
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conversion we might be able to tell when
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did they convert I suspect it's actually
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going to be very early in the infection
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if we can understand what that
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conversion is we might be able to
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prevent the conversion and so that would
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be a very important thing to be able to
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do to prevent other people from coming
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down with this disease the other
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advantage of this is there's a lot of
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public awareness of kovin 19 and this
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will put mecfs I think in the spotlight
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with a lot of people understand being
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more understanding of this disease
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so this is what our activity is at the
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moment the labs are still shut down
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we've been working on grants and papers
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and planning and and those kinds of
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things that we can do I spend almost all
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my day on with video conferencing with
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people all over the world and trying to
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make the progress when we are stuck at
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home so thank you very much
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the electronics
36:40
that we're using is a commercial device
36:41
as totally insufficient for what we need
36:44
to do and so we have to make a new
36:47
device that can do a hundred samples at
36:50
a time that circuit has been designed by
36:54
Rahim who is the original founder of
36:56
this methodology he sent a design for
36:59
fabrication one to China and one to a US
37:03
lab unfortunately both of those labs are
37:06
either way behind because of the
37:10
pandemic or they're closed down so
37:13
hopefully we will get that when things
37:17
open up a bit
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I wonder if they couldn't apply to get this new bit of kit fast-tracked as being of use for Covid-19 research?
https://www.s4me.info/threads/us-house-action-and-covid-leg-package-update.15120/
 
An update on current research posted on Whitney's Facebook page:

- Rahim Esfandyarpour has recruited new grad students to work on the nanoneedle, this "will speed things up considerably"
- Ron Davis is "working on a way to prevent the allergic reaction [from copaxone, the MS drug] but still provide the benefit"
- Ron Davis "will be conducting clinical trials on these drugs [copaxone, SS31, suramine]" but urges patients not to try them on their own
- The new "board design [for the nanoneedle] was sent to both China and US manufacturers to fabricate", but they're shut down, delays are unknown.
- Ron Davis has "looked into mycotoxins" but "says the current tests are not very sensitive or accurate and may give false results which isn't useful", so he's "develop[ing] a more sensitive and accurate test and will then start checking patients"

Moderator note: This post has been copied and some posts moved to this thread:
Messages from Whitney Dafoe
 
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I thought there were 4 candidates, glatiramer (Copaxone), SS31, suramin and SS19.

I have not heard about any wide-spread allergic reactions to Copaxone other than from Rachel. But of the folks I have heard of who have tried glatiramer, it has been unsuccessful for treating MECFS.

I'm guessing the glatiramer work entails narrowing down the peptide/polypeptide mix in Copaxone to identify the active ingredient in the mix. I wonder how many different peptides/polypeptides there are in Copaxone or in the generics?
 
Oh my. So much noise! Not a ME/CFS friendly video with that chainsaw in the background. I didn't get his message, and had to stop watching after a couple minutes.

Edit: It was better to watch on my computer.
 
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This is what he said about the "new theory." [starts at 2:44 in the video]

"But there are other things that are going on. One is that we've initiated a new project and a new theory about what may be going on.

"This new theory could give us a clue as to what's causing the disease but, possibly more likely, it will give us a clue of what new treatments that we can come up with.

"It's a novel theory that hasn't been explored before and we're putting together all the different components to do that.

"We've launched a new collaboration with people in the Medical Center that will help us with this, as well as a new startup company that will help us."
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They are developping a new covid-19 assay based on saliva (currently results in 40minutes) so that when the lab reopens they can regularly test staff.
The 'new' nanoneedle circuit has been designed(which will allow them to process about 100 samples simultaneously) and they are awaiting its production both in the US and China.

On the covid-19 project they are going to be using samples from patients who have been to hospital.
 
Might be some intellectual property issues.

Also if he is saying that they will use an existing start-up company, I think that is better than starting up a brand new company to do this project. It could take a while to get things going if they are making a brand new company.
 
Pure speculation:


In the past, they've talked about testing to see if adding various drugs could alter the nanoneedle results. Perhaps they've seen some result that has led to a "new theory."

This could tie in to why they want to run nanoneedle tests on 100 aliquots from a single sample, i.e. they want to test 100 different drugs, or drug concentrations, against the same sample simultaneously.


Again, just a wild guess.
 
“The nanoneedle’s inability to keep up with the demand meant that its full potential wasn’t nearly being reached. A dramatic upgrade was needed.

That has happened. The nanoneedle has been redesigned and sent to a manufacturer in China and one in the US to produce. Where it could test one sample and one control at a time, it can now test 100. That kind of production is essential for the nanoneedle to be able to test the wide variety of drugs Davis wants to test, and to run the multiple samples needed to try to uncover the mystery element that seems to be bollixing things up in the blood of ME/CFS patients.

Davis is waiting for the return of the new nanoneedle – and the ability to test patient samples again. Unfortunately, production has been halted due to the pandemic. Only recently, has the Chinese company that could make been reopened, but there is no set delivery date. Still, it’s on its way.”

interesting update. I think the nano needle finding it is one of the most interesting out there and it’s been frustrating that the Stanford team hasn’t been able to press on with their work. Hopefully, this will now change.

I would also love to see research into the cell biology changes that presumably account for the Nanoneedle findings during the salt stress test.

Also, I love that bolded line.
 
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