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

Discussion in 'ME/CFS research news' started by John Mac, Sep 26, 2019.

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Page 5 of 17

wigglethemouse Senior Member (Voting Rights)

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1,215

cassava7 said: ↑

From the livestream of ME Action (US) for ME Awareness Day, 34:00 to 42:00
Click to expand...

For those not wanting to use Facebook here is the YouTube link

https://www.youtube.com/watch?v=2EhTzwJQNOg

wigglethemouse, May 14, 2020

#81

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wigglethemouse Senior Member (Voting Rights)

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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
33:27
um need they don't need much of an
33:30
introduction you all know them well in
33:32
our community dr. Ron Davis and Janet
33:35
Defoe are caregivers to their son
33:37
Whitney and they are longtime Emmie
33:40
research advocates dr. Ron Davis is
33:43
director of Stanford genome Technology
33:45
Center at Stanford University
33:50
thank you that's not me
33:56
[Laughter]
34:00
I'm in focusing on on conducting
34:04
research into this disease and also
34:08
trying to get other people to initiate
34:11
research this is weird because somebody
34:16
else's picture is up there okay I think
34:21
the rest of us can see you yeah I think
34:22
you're out right
34:23
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
34:35
a detailed understanding of what's going
34:37
in the body and there's a lot that goes
34:39
on in the body we will come up with
34:42
ideas that will lead to a treatment a
34:45
lot of the efforts to treat this disease
34:47
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
35:00
focused on this I would like to try to
35:02
figure out how to cure it under the
35:04
disease in order to cure it I think we
35:07
have to find the primary cause and not
35:10
just some of the symptoms and so that's
35:13
our biggest deep dive into the
35:16
and into them like in underpinnings of
35:18
this disease so we have a program that
35:21
looks at trying to figure out a good
35:22
diagnostic as well as using the
35:26
molecular understanding to develop
35:28
treatments we are starting to do some
35:31
clinical trials now some possibilities
35:34
those are underway
35:36
they've been hold up a little bit
35:37
because of the the Cova 19 pandemic we
35:43
had also then first like to get a cure
35:45
and also possibly by prevention so one
35:52
of the things we did discover was that
35:54
there is a potential diagnostic and that
35:57
is using something called the nano
35:58
needle which is electronic device that
36:00
looks at the electronic behavior of
36:03
cells under stress and that has worked
36:07
in over 50 patients I'll show that
36:10
signal none of the patients fail to show
36:14
it and no healthy controls show the
36:16
signal so it's a it's a very good
36:19
measure whether other diseases will show
36:23
that we don't yet know and that's
36:24
actually a very difficult thing to to do
36:27
because there's a lot of diseases the
36:30
next phase of that project is to scale
36:33
it up so that we can do lots of
36:35
simultaneous tests and that requires
36:37
changing the electronics 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 either in China or they
37:19
you
37:21
and that will be in the next phase where
37:23
we can do a lot more testing and we want
37:26
to use that to try to see if we can find
37:29
drugs that will alter the Nano needle
37:32
assay we also have been looking very
37:36
deeply into genetics as well as
37:40
metabolomics because those give us a big
37:42
picture of what's going on in the body
37:44
it's hard to do human because we can't
37:47
go in and sample any tissue we want then
37:50
we'd love to have some brain samples but
37:52
I have no volunteers and so we have to
37:56
take what cells we can get without being
37:59
invasive in the patient so to solve that
38:02
problem we are now taking cells from
38:04
blood cells from patients which is non
38:06
invasive and converting them to other
38:09
cell types and hopefully that will give
38:12
us a to do research on other other types
38:16
of cells including brain cells so the
38:20
genetics has pointed us in the direction
38:22
that it may be involved the tryptophan
38:25
metabolism to Canora knee and that's
38:29
because all of the patients that we've
38:32
done in the 77 patients with genetic
38:34
analysis all have the mutation in a gene
38:36
called I do - that's unusual and that
38:43
suggests that that pathway probably is
38:45
involved somehow in the in this disease
38:49
and so we've come up with a hypothesis
38:51
is called the metabolic trap and what
38:53
we're trying to do now is to test that
38:55
trap we initially started out using
38:58
cells from patients that was very
39:00
difficult because we could get only a
39:02
few cells and so the signals were very
39:05
low and we couldn't be sure of the
39:08
results so we've switched now to doing
39:10
cultured cells those take a long time to
39:13
do all this conversion and make
39:15
different cell types that it now gives
39:17
us an abundant amount of material also
39:22
because we have a lot more material we
39:24
don't have to use a very expensive mass
39:26
spectrometer which is very difficult to
39:28
access because everybody wants to use it
39:31
and we can simply use something called
39:33
an HPLC column of which we have an
39:36
expert in that field and we can run up
39:38
do a run every day so that will speed up
39:41
things as soon as we get the the cells
39:46
we have other models that we would like
39:49
to follow and the other important issue
39:52
is the fact that this copán 19 pandemic
39:55
is an opportunity to actually see
39:58
patients that have come down with a
40:00
viral infection convert to mecfs and i
40:05
suspect that many of the patients that
40:08
have had this disease will do that
40:09
conversion and so we've set up a
40:11
collaboration with our other
40:15
collaborative research centers supported
40:17
by the open medicine foundation to
40:19
conduct a collaborative effort
40:23
throughout the world to collect samples
40:25
and look at them as they do the
40:27
conversion and we'll this will be a very
40:30
deep dive so there's been a project
40:32
initiative here at Stanford with many
40:34
many faculty members interested in kovin
40:37
19 this is a great opportunity to also
40:39
teach them about mecfs so we're going to
40:43
do this collaboratively at where all the
40:46
data is shared even some of the local
40:48
companies have pitched in and said they
40:50
will do their analysis for free and so
40:52
this will be a very very large data
40:54
collection of looking at the koba 19
41:00
infection and then following that and
41:03
seeing if if patients actually convert
41:05
and if we can see what happens in that
41:08
conversion we might be able to tell when
41:11
did they convert I suspect it's actually
41:14
going to be very early in the infection
41:15
if we can understand what that
41:18
conversion is we might be able to
41:20
prevent the conversion and so that would
41:23
be a very important thing to be able to
41:24
do to prevent other people from coming
41:27
down with this disease the other
41:29
advantage of this is there's a lot of
41:31
public awareness of kovin 19 and this
41:34
will put mecfs I think in the spotlight
41:37
with a lot of people understand being
41:39
more understanding of this disease
41:43
so this is what our activity is at the
41:45
moment the labs are still shut down
41:47
we've been working on grants and papers
41:50
and planning and and those kinds of
41:53
things that we can do I spend almost all
41:56
my day on with video conferencing with
42:00
people all over the world and trying to
42:03
make the progress when we are stuck at
42:06
home so thank you very much
Click to expand...

wigglethemouse, May 14, 2020

#82

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Sly Saint Senior Member (Voting Rights)

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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
Click to expand...

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/

Sly Saint, May 14, 2020

#83

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cassava7 Senior Member (Voting Rights)

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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

Last edited by a moderator: Jun 22, 2020

cassava7, May 21, 2020

#84

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Grigor Senior Member (Voting Rights)

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Thank you for the summary!!

Grigor, May 21, 2020

#85

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Jaybee00 Senior Member (Voting Rights)

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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?

Jaybee00, May 21, 2020

#86

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mango Senior Member (Voting Rights)

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https://www.youtube.com/watch?v=dp-RIPI0Tx4

mango, Aug 10, 2020

#87

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Jaybee00 Senior Member (Voting Rights)

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New MECFS theory.....hmmm— maybe not the metabolic trap.....

Jaybee00, Aug 10, 2020

#88

Yessica, Webdog, Legend and 2 others like this.
Jaybee00 Senior Member (Voting Rights)

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I guess I was hoping that he could give a 30 second overview of this new theory, even if not tested, fully vetted or published.

Jaybee00, Aug 10, 2020

#89

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Legend Established Member (Voting Rights)

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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.

Last edited: Aug 10, 2020

Legend, Aug 10, 2020

#90

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Forbin Senior Member (Voting Rights)

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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."
Click to expand...

Last edited: Aug 10, 2020

Forbin, Aug 10, 2020

#91

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Sly Saint Senior Member (Voting Rights)

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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.

Sly Saint, Aug 10, 2020

#92

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Mij Senior Member (Voting Rights)

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Janet Dafoe on PR:
"Ron isn’t ready to talk about the new theory yet For several reasons. I can tell you that it does fit in nicely with Naviaux,’s theory as well as the metabolic trap".

https://forums.phoenixrising.me/thr...ay-quarantine-video-update.80965/#post-229045

Mij, Aug 10, 2020

#93

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Snow Leopard Senior Member (Voting Rights)

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Mij said: ↑

Janet Dafoe on PR:
"Ron isn’t ready to talk about the new theory yet For several reasons. I can tell you that it does fit in nicely with Naviaux,’s theory as well as the metabolic trap".
Click to expand...

To be honest, those mentions make me feel less confident in the the theory, rather than more confident...

Snow Leopard, Aug 11, 2020

#94

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Saz94 Senior Member (Voting Rights)

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Snow Leopard said: ↑

To be honest, those mentions make me feel less confident in the the theory, rather than more confident...
Click to expand...

Me too

Saz94, Aug 11, 2020

#95

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Diluted-biscuit Senior Member (Voting Rights)

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Snow Leopard said: ↑

To be honest, those mentions make me feel less confident in the the theory, rather than more confident...
Click to expand...

Glad it’s not just me, this kind of marketing nonsense just doesn’t help.

Diluted-biscuit, Aug 11, 2020

#96

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Jaybee00 Senior Member (Voting Rights)

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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.

Jaybee00, Aug 11, 2020

#97

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Forbin Senior Member (Voting Rights)

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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.

Forbin, Aug 11, 2020

#98

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Jaybee00 Senior Member (Voting Rights)

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Merged thread

Is Ron Davis’s ME/CFS Collaborative Research Center at Stanford Poised for a Breakthrough?

https://www.healthrising.org/blog/2...atigue-research-center-stanford-breakthrough/

New Nanoneedle

Last edited by a moderator: Sep 25, 2020

Jaybee00, Sep 25, 2020

#99

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Simon M Senior Member (Voting Rights)

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“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.

Simon M, Sep 25, 2020

#100

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