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

Sensitive advice to choose food over supplements and to not necessarily react to every little bit of information that is shared.

I am disappointed that there was even a hair analysis study- it is highly related to witch hunt "medicine"- to believe that heavy metal and "toxins" are the culprit.

I did not open the Health Rising link- is there a Scientific publication related to that?

 

Didn't see any papers mentioned but only quickly skimmed the blog post, so might have missed it.

Yes, a bit cringe-making but apparently there are a handful of credible hair testing labs around the world, they're used for forensics, that sort of thing. It's not clear what sort of lab was employed in Davis & Crosby's study.

 

Cort mentions low selenium, copper and manganese.

According to the NIH, selenium can be tested for accurately, including in hair samples. But for copper and manganese there don't seem to be any reliable tests, at least not for use in clinical practice. Maybe better tests are available for research.

https://ods.od.nih.gov/factsheets/Selenium-HealthProfessional/
https://ods.od.nih.gov/factsheets/Copper-HealthProfessional/
https://ods.od.nih.gov/factsheets/Manganese-HealthProfessional/

This was new to me:

I wonder if the hair test study looked at iron status of participants as a confounding factor?

N=1 : I've never given manganese a thought, never had it measured and never supplemented with it. But with my haemochromatosis I've had periods of significant iron overload as well as deficiency (due to overly aggressive treatment). Now wondering if that means I also had corresponding periods of too much/too little manganese and, if so, what impact that may have had. Having said that, I've never noticed any correlation whatsoever between my iron levels (and therefore, possibly, also my manganese levels) and my ME symptoms so it's probably not that relevant.

 

One mineral can off set the others, there has to be a proper balance. I had below normal levels of ceruloplasmin and ferritin several years ago. I've never had selenium or manganese levels tested, but I was low/below normal on so many other amino acids, fatty acids and vitamins.

Problem with absorbing nutrients could be as simple as that.

 

I'm glad Davis got a win.

 

New video done by Janet Dafoe. This one is much much much better than the last one and is worth watching (only about 15 minutes). Focus is on the itaconate pathway/trap.

https://twitter.com/user/status/1537132036338728964

 

This is v interesting direction. Makes me feel more optimistic. Thanks to Janet for getting Ron talking!

And — this project is funded by Vinod Khosla? He’s a billionaire venture capitalist who also has a fund which he says is “his version of philanthropy”. Quite a big win for OMF to get funding from him and if they are successful, would imagine he’d put more money towards it.
https://www.bloomberg.com/news/arti...-khosla-predicts-us-china-techno-economic-war

https://www.youtube.com/watch?v=9fDW5Hw3C1Y

edit: just saw on older forum posts that he’s been involved from beginning and might have a relative w ME.

 

His daughter has MECFS.

 

Can’t he put a billion in then? Why are we scraping for money??

 

Khosla is sort of a difficult-ish character. See here

https://www.nytimes.com/2018/08/30/...fckrsCoqeh22ibSiI1xeABvMbavfSP&smid=url-share

 

From PR—not a private thread.
https://forums.phoenixrising.me/threads/ron-davis-update.87960/page-2



Janet Dafoe
Board Member
MonkeyMan said:
I'm confused. Wasn't just a week or two ago that Ron seemed so dispirited in a video he made? Was that before this was discovered??

No, it was just that the interview questions didn’t elicit much that was new and interesting. I imediately noticed this and proposed that I interview him because I know what’s happening and exciting in the lab. So I am going to make a bunch of videos with everything that’s going on in the lab. So far we have nine planned. And I just solicited Robert Phair, and I’m going to interview him so he can explain the itaconate shunt better and show his beautiful diagrams. I am considering interviewing other people too. I seem to be able to summarize things in a way that patients can understand and get researchers to explain things and tell us what is exciting to them. I’m kind of excited about this project and I am learning about how to record on zoom . Feedback is definitely welcome!



Janet Dafoe
Board Member
Oliver3 said:
Is the metabolic trap dead in the water or is this a drilling down into further aspect s of the trap

This is an additional hypothesis at this point and they are continuing to pursue both of them and exploring how they are related. The third video is going to be an update on the metabolic trap.

 

Latest video from Ron Davis on the manganese hair study:

https://www.youtube.com/watch?v=Cf8_xz0bVZc

Sounds like they theorize a lack of manganese in mitochondria and plan to experiment with adding manganese and checking the effect on enzymatic activity. They theorize effects on glucose metabolism and urea elimination, possible connection to spermine findings from Jason et al study on mono to ME. They plan N=100 for this study.

 

Well, N=1 but the groundwater where I live has a lot of manganese, so much so that even treated with a salt filter and reverse osmosis it stains everything, so regular consumption is not a factor either way.

 

They have trying to get funding from NIH for the maganese and copper w/o success

RD:

"Maganese needs to be digested and transported from the gut-->blood-->cell-->mitochondria. It can get blocked at any one of these levels. It's got to get into the mitochondria in order for it be functioning properly. The plan is to run enzymatic activities of cells to look at enzymes in the mitochondria to see if they're functioning at a normal level, and then add maganese to them to see if they increase activity".

 

I know that I have said this many times before, but if they can do a pilot study and get good results, hopefully published results, the likelihood of getting NIH funding goes way up. If you look at the researchers who have been funded, that’s what the vast majority have done.

I know that a lot of people would like for NIH to change that process, but just following it it a heck of a lot quicker.

 

I took manganese for a while after finding out I may be deficient as it seemed like potential cause for some of my symptoms. My impression is that it didn't do anything. That doesn't mean there's no merit to the idea. If there is a deficit, it might require a different approach or dosing or treatment duration.

 

I have low citric-acid cycle intermediates. Most important cofactors of this cycle are: iron, copper and OOQ10.

A deficiency of the any of following factors may support the block of the citric acid cycle. Vitamin B1, B2, B3, lipoic acid, pantothenic , maganese and magnesium.

Increasing supplementation did nothing. It's a lot more complicated than taking a supplement.

 

What's OOQ10? (Google did not enlighten me)

Did you mean CoQ10?

 

@Wonko, yes CoQ10