Ron Davis Q and A -Massachusetts- March 2018

March 2018- short Q and A
Ron Davis says they are working on 4 possible biomarkers.

They believe something may be wrong with a central control system in the body. If this can be corrected, there may be no need for a new drug.

https://www.youtube.com/watch?v=ULDbRgpY3zw

 

Many thanks for posting Binkie4. The sounds not very good but well worth listening to.

He says patients have lots of mutations. Does anyone know, is he meaning inherited mutations or acquired mutations in our lifetimes?

 

Thanks @Daisymay. I'm not sure he answered that question specifically. The family study that he spoke of may throw some light on that.

Not sure how anyone else views it, but I thought this presentation had a crisper more focussed note. It was interesting that he wasn't trying to group patients into subcategories. Each patient may have a different collection of metabolites which would presumably present with different symptoms. Please jump in scientists- I am not one of you.

I wonder what the other three possible biomarkers are, those where they do not yet have sufficient data. I think I remember that the numbers whose blood has been tested with the nano needle are very small.

 

I sincerely hope he will be right! He said he may be able to say more by this summer - that would be absolutely unbelievable. Let's see.

 

How do they intend to treat the "central control system" if not with a new drug? Suramin?

 

No information given but they hoped to have an answer about one thread by the end of the summer. Towards the end of the clip if you want to check it.

'There may be ways to manipulate people out of the circuit: they are looking at one primary circuit which they hope to have an answer to by the end of the summer.'

 

If I understood this right, he thinks there is a single underlying mechanism that is capable of producing different symptoms in different patients. He also mentioned seeing different (genetic) mutations in different patients.

I may be wrong, but it sounds kind of like the underlying mechanism may be exposing different underlying genetic weaknesses which would otherwise not be apparent in a healthy person.

Perhaps like giving a garden less water, the weakest plants will be affected first, but the weakest plants are different in every garden.

 

He has only done the nanoneedle test on 10 patients (?) I wonder if he might consider trying it out on a couple of Nancy Klimas GWI patients. If it proved negative then that would go towards showing it is a good test for ME, and if positive then maybe some of the GWI funding might help to develop it further.

 

My only (very basic) grasp of science has been entirely created by the fact that I became ill with ME, so take this with a pinch of salt...

The only thing I don't understand about this is...presumably we got ill many different ways. And even tho we ended up in the same, or similar state, surely there could be various different reasons why we continue to be there, and therefore there can't be a one size-fits-all solution for us? As I said though, I have no real idea about this sort of stuff and happy to defer to those more in the know.

 

There's a thread somewhere that discusses the deformability of red blood cells and GWI.(posted below)
If I have this right, Ron Davis' (with San Jose Univ) research shows the red blood cells do not deform as necessary to fit along narrow capillaries so that full oxygen is not being picked up. Blood is purplish and viscous.

The research on GW patients shows the opposite.
https://www.s4me.info/threads/abnor...s-a-preliminary-study-2018-condon-et-al.3707/

https://www.omf.ngo/2018/03/21/omf-funded-research-red-blood-cell-deformability-in-me-cfs/

 

My O2 score is pretty much always low.
This would fit with full oxygen not being picked up, along with many other conditions.

Wonder what the O2 level is of those few pwme whose blood Ron has studied.

 

but I don't think that is what the nanoneedle test is testing (as far as I remember even Prof Davis doesn't know why the test works; something to do with impedance).

eta: this is the test he does by stressing the cells out with salt(?)

 

As far as I understand I think Prof Davis is looking for a biomarker for ME/ cfs. The closest he has got is by examining pwme red blood cells which do not deform in the same way as non patients. All the cases he has tested ( not very many, both patients and non patients) show this consistent pattern.

I do vaguely remember something about impedance in an earlier video clip but have no recollection of where it fits into this biomarker work.

 

The following is just a small excerpt from the full transcript, which is worth reading (of course). Not sure if we have a thread for this or not.

http://www.meaction.net/wp-content/uploads/2015/05/Ron-Davis-Transcript.pdf

 

That's all very exciting. I don't want to get my hopes up, but I really hope he can share more info soon. We need a little bit of sunshine.

 

The URL suggests that talk is from 2015, but I thought it was more recent than that.

 

The one at the beginning of this thread is from March this year, to accompany a viewing of ' unrest'.

The information in the other one seems to be, as @Barry says, from 2015.

 

I'm a bit confused, because I thought I saw this being announced since I started getting into this, which was around Aug 2016.

 

I think this must be what I saw originally ...

http://www.meassociation.org.uk/201...hs-at-his-lab-in-the-states-24-february-2017/

So now I don't know. Is the MEAction URL a red herring, and nothing to do with the date? Or did Ron Davis have much of this done in 2015 and then repeat it verbatim (seems unlikely).

I really wish people would avoid the dreadful habit of not dating their documents.

 

He explains the different tests in this video from December 2017:

https://www.youtube.com/watch?v=ABeGOaHx8wg