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

Jaybee00 said:
Comments from Laurel Crosby


Hi everyone. My name is Dr. Laurel Crosby and I’m the co-investigator on this project. We sampled hair many years ago because patients were concerned about heavy metals exposure. But we found that certain trace metals appeared to be low. We don’t know if this is really a deficiency or if it’s an artifact. (That is, maybe people with ME/CFS don’t go outside as frequently or wash their hair as often as healthy counterparts. The minerals could be low in hair because the environmental exposure is lower.)

When we started to explore this question further, we realized that manganese is an important trace metal for enzymes involved in metabolism. So, we’re actually focused on aspects of metabolism and how people with ME/CFS metabolize various sugars and amino acids. If there is a clear pattern that manganese enzymes are affected, then we can speculate about why this happens. Maybe manganese content is fine in the blood, but it’s not getting into cells or into the mitochondria. These are interesting questions that we’ll pursue in our 3 year study.

Here is what you should know now: Dietary manganese comes from carbohydrate-based foods like cereal grains. There has never been a documented case of manganese deficiency because of low dietary intake. (But that was before keto diets were popular!) Calcium supplements can also bind up manganese in the gut and prevent absorption. So, there are potential ways that someone *could be* deficient, and we’ll be looking at this from many different angles.

The problem with supplementing with a trace metal like manganese is that too much can be toxic. The safest strategy is to get nutrients from whole foods. Please help us keep the ME/CFS community safe by recommending foods over supplements.

Thank you,
-Laurel
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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?
 
Milo said:
I did not open the Health Rising link- is there a Scientific publication related to that?
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Didn't see any papers mentioned but only quickly skimmed the blog post, so might have missed it.
Milo said:
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.
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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:
NIH manganese info said:
Dietary iron intakes and iron status (measured by serum ferritin concentration) appear to be inversely associated with manganese absorption [14,15]. The mechanism for this effect is unknown, but the shared transporter of iron and manganese in the intestine might play a role [2]. In addition, men appear to absorb dietary manganese less efficiently than women, possibly because men usually have higher iron status [7,16].
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NIH manganese info said:
Iron deficiency increases manganese absorption and can therefore exacerbate symptoms of manganese toxicity [2].
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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.
 
Ravn said:
Cort mentions low selenium, copper and manganese.
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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.
 
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



edit: just saw on older forum posts that he’s been involved from beginning and might have a relative w ME.
 
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Jaybee00 said:
Khosla is sort of a difficult-ish character. See here
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ny times article about Khosla said:
Mr. Khosla’s bluntness makes it difficult to find people who take his side of the Martin’s Beach battle. Bring his name up around Sand Hill Road, the nexus of venture capital in Menlo Park, Calif., and people grimace. Email the friends he suggested you email, and the responses vary.


“Vinod is deeply principled, and therefore sometimes difficult to work with,” Jack Dorsey, the chief executive of Twitter and Square, wrote in an email. Mr. Khosla has been a mentor and adviser on both companies and is a frequent dining companion. (Mr. Dorsey also fasts until dinner.) “But that comes from a place of putting what he cares about above all else.”

Mr. Khosla advocates truth-telling at every juncture, even if it is painful. He calls the book “Lying,” by Sam Harris, his philosophy for life. When he started Khosla Ventures in 2004, he put the phrase “I prefer brutal honesty to hypocritical politeness” on the website, and it has always been there.
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:) Perhaps we would like him here.

Jaybee00 said:
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.
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I agree. Perhaps OMF and/or Ron and Janet have been listening to criticism. This was much better, focused on a single project, giving sufficient background to begin to understand it and creating much more of a sense of worthwhile endeavour.
 
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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:



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".
 
Mij said:
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".
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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.
 
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