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

[overtheedge]

video can be found over here https://forums.phoenixrising.me/thr...talks-me-cfs-at-columbia-and-princeton.78440/

 

[Rufous McKinney]

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,

Maybe we can skip ahead into the video....as so many of us DO care so much about- their family, and this sacrifice.

What an honor it is, to know that a person like Dr. Davis, is in our world.

And 100's of people heard this Good News....I'm confident that trip will generate some Interest in the young researchers.

 

[Sing]

I was listening not only for my own information, but also because I was curious about the way he would deliver this talk and the kind of impact it might just have. My apology for another sports metaphor but I felt he knocked it out of the park!

 

[SlamDancin]

Yeah it’s a pretty damn good summary of all the work so far. I did notice of course he mentioned again the metabolites show signs of Collagen degradation and Jen Brea’s recovery.

 

[Sing]

I think I have collagen degradation too, not only in my neck. But I do have osteoarthritis and am getting up there in years. Still my decline in this area is going faster than my relatives, so I wonder if my MECFS is pushing things along?

 

[SlamDancin]

Collagen turnover I believe has been found to be faster than any other protein. It’s heavily in demand and in OA it’s been proposed that the collagen is being degraded primarily over other sources because it’s very energy rich as far as I’m aware. I think this all plays into MECFS because collagen may be the bodies preferred fuel in certain altered energetic state and this is not sustainable for certain subgroups of people who end up with full blown CFS.

 

[Diwi9]

I appreciate that Ron is not just doing research...he's using his research to advocate for patients to professionals and to recruit new researchers. The NIH and CDC are not doing this work...Ron has taken on more than one facet to solve this disease.

 

[SlamDancin]

@Diwi9 I was impressed by turnout as well. 300 scientists attended? Full house it sounded like.

 

[Sing]

Collagen turnover I believe has been found to be faster than any other protein. It’s heavily in demand and in OA it’s been proposed that the collagen is being degraded primarily over other sources because it’s very energy rich as far as I’m aware. I think this all plays into MECFS because collagen may be the bodies preferred fuel in certain altered energetic state and this is not sustainable for certain subgroups of people who end up with full blown CFS.

 

[Sing]

Interesting idea that collagen could be a preferred energy source. This would not surprise me.

 

[SlamDancin]

I have a genetic mutation at ATP7A according to the Lights group and this encodes for copper usage for ATP production in collagen producing cells. So I believe this explains part of my susceptibility to getting CFS.

 

[SlamDancin]

The source on the collagen being the bodies’ preferred protein at least is floating around the forum somewhere. In the context that Glycine requirements may be higher than previously thought. I would be interested to know the level of Glycine in Ron’s metabolite study.