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Ron Davis Talk: Quest for an ME/CFS Diagnostic Test, Columbia Univ, Nov 21, 2019 Livestream

Gemini

Gemini

Senior Member
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East Coast USA
ljimbo423 said:
Listening to Ron I got the very clear impression that he thinks that whatever is causing the mito. dysfunction is in the plasma. Which I think would make a good starting point for looking for whatever that is and trace that back to it's origin.
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@ljimbo423 like you I got the impression "something in the plasma" continues to be a key focal point.

Along those lines Swedish scientists have developed a "Blood Atlas" listing the proteins in human blood with a "plasma" section. Wonder if biochemists have or could compare ME/CFS plasma to this data as a starting point?

1574428750590.png



https://www.proteinatlas.org/humanproteome/blood
 
percyval577

percyval577

nucleus caudatus et al
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1,302
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Ik waak up
ljimbo423 said:
Listening to Ron I got the very clear impression that he thinks that whatever is causing the mito. dysfunction is in the plasma. Which I think would make a good starting point for looking for whatever that is and trace that back to it's origin.
Click to expand...
Davis also mentioned some months ago that it would be a bigger particle, maybe an exosome.

Also these days has been published this paper, sounding very successful:
https://www.sciencedirect.com/science/article/pii/S0889159119307627 Eguchi et al

They found specific proteins in extracellular vesicles, eg for actin regulation.
 
percyval577

percyval577

nucleus caudatus et al
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Ik waak up
ljimbo423 said:
If it is exosomes causing the mito. dysfunction, the big question is, where are they coming from and what is causing them. My hunch is, if it is exosomes, it's the immune system that is causing them.
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My guess is, or wants to be, that the immunesystem in me/cfs is driven by the basal ganglia (via hypothalamus).

bread. said:
so why is plasma exchange not working then? I think the nano needle is bs.
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Might be. I could integrate it in my guess as well as I could be without it. Though I don´t think that any peripheral issue (and I think there are some) is the cause of the main symptoms (IBS is annoying of course).
I rather think it this way around: There is in the brain the sustained configuration that there must be done something in the periphery, maybe there is also a deficiency from some elevated need in the competing brain.
 
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JES

JES

Senior Member
Messages
1,323
bread. said:
so why is plasma exchange not working then? I think the nano needle is bs.
Click to expand...

How could it be bs when the nanoneedle explicitly shows that when healthy cells are subject to ME/CFS plasma, they start to behave abnormally, and vice versa. That's pretty much as good an experiment as you can get, it clearly demonstrates cells from ME/CFS patients work normally when subject to "normal" plasma.
 
P

Possibly James May

Messages
38
@bread. I wouldn’t go as far as calling it BS, but there are still big questions that need to be answered. What is the sodium chloride responding to? Why are there certain drugs (SS-31 and Copaxone) making the patients blood return to a healthy state? Until more testing is done on ME/CFS patients, patients with other diseases, and healthy controls, we won’t know if the nanoneedle is of any value to this disease.
 
Murph

Murph

:)
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1,799
Three new things I got from reading @paolo's blog.

1. The copaxone has been tried in the nanoneedle device and it works a little bit at a low strength, but quite a bit more at a higher strength. This seems logical and bolsters our understanding of the relationship. It also demonstrates to me they have tried it at least twice!

2. They have discovered a possible difference in the way the blood vessels in our fingernails look. This is potentially useful as it's a cheap and easy thing to test. The term for the test is "nailbed capillaroscopy."

3. I saved perhaps the best for last. The stiff red blood vessel finding may be back. The finding that red blood vessels would not deform properly was there in early work, but it seemed to have been refuted. I was disappointed by that as I think vascular/circulatory problems seem extremely likely in me/cfs. Now the finding is being resurrected as apparently the refutation depended on an experiment that first removed the red blood cells from plasma. And if there is something in the plasma, that could be what is causing problems with RBC deformability.
 
Rufous McKinney

Rufous McKinney

Senior Member
Messages
13,395
Murph said:
The term for the test is "nailbed capillaroscopy."
Click to expand...

Regarding that: some more background.... and note the early 19th century, inflammation and capillary alterations were observed. 21st century- why diagnosis this?

"Capillaroscopy is a non-invasive diagnostic technique designed to evaluate small vessels of the microcirculation [1]. Nailfold capillaries were first observed in the 17th century with primitive magnifying equipment, and in the early 19th century the first associations between inflammation and capillary alterations were made. Beginning with the works of Maurice Raynaud's [2], research in the second half of the 19th and first decades of the 20th century established a direct link between capillary abnormalities and certain medical conditions."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4918046/
 
Ben H

Ben H

OMF Volunteer Correspondent
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1,131
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U.K.
Hi guys,

Here is a piece by @Janet Dafoe (Rose49) which includes the video of Ron's talk at Princeton University:

Tocq_jpLnd-dCvxKHzsxwmvp0QJ_hAFqJKB1Bl-Ek0kLzjzQyBcJCsus1E99yTjkwYjs67JX6_9RcOfHiwuQhHKrn6PD6Yc5o4nZlkbVA7NkfKNwws0ueEF_tsZrtL2nREnorGCgOzFGBQlxZtwZJp7oha3vAh4Xf0UZeyVnJNj1NN_zTKflEXYlkGEgyshDBEpSvpk8hbPaiWA=s0-d-e1-ft

#TripleTuesdayOMF Spotlight - Ronald W. Davis, PhD

LpnlhMdSUvmLiRsxXjc5H833bXlYnFOswLkjU9Kt0CiRyvSse3cGly1SJTYrbGs0OOgMa7gSXy0WInlONxrZMnUmoLUjSPnYT7D3NmnEND4vLR2_bgZ9Il72Y-ctIU_b9qiG=s0-d-e1-ft


By Janet Dafoe, PhD

Dr. Ron Davis spent the last week on the East Coast giving talks and talking individually to scientists and doctors about ME/CFS. First he spent two days at Princeton University. He talked to individuals, groups of graduate students, and groups at lunches and dinners. He gave a talk in the huge Molecular Biology Department (includes immunology, microbiology, genetics, biochemistry, et al) in a big lecture hall with about 300 scientists. He sensed that they were surprised and shocked by how many people are affected and how severe the disease is. They were impressed by the progress Dr. Davis has made with such minimal NIH funding and relying on donations from patients.

Then Dr. Davis went to the Einstein Medical Center at Columbia University and gave a similar talk to 100 doctors and scientists in person and 184 more who logged in online. Again, they were surprised and shocked by the information he presented. He knew it was being Livestreamed, so he didn't take questions, but talked for 1 1/2 hours and incorporated questions that he is commonly asked. Nobody left. Ron really emphasizes the prevalence and severity of ME/CFS, the need for medical care, the urgent need for research, the growing group of great scientists that are working on it and the fact that none of them have enough funding from NIH.

The week before this, Dr. Davis gave the keynote address at Synchrony 2019, a large Autism conference in Pleasanton, California. Again, he had a large audience of researchers, doctors, and caregivers. They were really impressed by his research and were struck by some of the similarities between Autism and ME/CFS. OMF Scientific Advisory Board Member Robert Naviaux, MD, talked just before Ron. They are going to collaborate with Ron, sending some patients to his lab so they can investigate similarities and differences. The Autism group will be funded by one of the Autism Foundations, since Ron only uses Open Medicine Foundation funds on ME/CFS.


View Dr. Davis's lecture at Einstein Medical Center.

Donate now to accelerate research.
All donations through Dec. 3 will be tripled.


www.omf.ngo/triple-giving-tuesday-2019/



B
 
Sing

Sing

Senior Member
Messages
1,782
Location
New England
He really is! He is punching now with the power of a champion. This presentation was riveting and powerful by its directness, honesty and courage. I also felt astounded by all the experiments and avenues for discovery that he is working on. If one approach isn’t promising, he is right on to the next, looking for all the promising angles and following the new leads.
 
SlamDancin

SlamDancin

Senior Member
Messages
554
@Sing It’s just sort of hard to watch him talk about all the parts we already know, Whitney, the severity loneliness and of the mental anguish of the disease, etc. I switched to a comedy podcast for now but I will switch back soon since you recommend it so highly.
 
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