Ron Davis Update

Sing

Sing

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New England
Janet Dafoe said:
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!
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I know you were trying to help patients understand Robert Phair’s talk, but each time you interrupted him, I lost the thread of what he was explaining. None of your interruptions were helpful to me at all. He also did not continue his talk exactly where he left off but seemed derailed by your interruptions, and would resume in a different place. I wish you would save your attempts at summarizing as well as your questions to the end.

Robert Phair is an excellent speaker and teacher Even though I lack any college level science and also have brain fog, I could hang onto the overall pattern and jist of what he was saying. If you think you understand and can summarize his material better than he can for patients, please give a separate talk.

It is very important for me to understand what Robert Phair has to say, and so to start with, this means hearing him out through the details as he knows and understands them better than anyone. I am sorry to criticize but his information is extremely important to get clear, and a conversational back and forth with interruptions is not the best way to achieve this. .
 
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Oliver3

Senior Member
Messages
931
Sing said:
I know you were trying to help patients understand Robert Phair’s talk, but each time you interrupted him, I lost the thread of what he was explaining. None of your interruptions were helpful to me at all. He also did not continue his talk exactly where he left off but seemed derailed by your interruptions, and would resume in a different place. I wish you would save your attempts at summarizing as well as your questions to the end.

Robert Phair is an excellent speaker and teacher Even though I lack any college level science and also have brain fog, I could hang onto the overall pattern and jist of what he was saying. If you think you understand and can summarize his material better than he can for patients, please give a separate talk.

It is very important for me to understand what Robert Phair has to say, and so to start with, this means hearing him out through the details as he knows and understands them better than anyone. I am sorry to criticize but his information is extremely important to get clear, and a conversational back and forth with interruptions is not the best way to achieve this. .
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Just listen to it again..you'll get the gist
 
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bthompsonjr1993

Senior Member
Messages
176
Sing said:
I know you were trying to help patients understand Robert Phair’s talk, but each time you interrupted him, I lost the thread of what he was explaining. None of your interruptions were helpful to me at all. He also did not continue his talk exactly where he left off but seemed derailed by your interruptions, and would resume in a different place. I wish you would save your attempts at summarizing as well as your questions to the end.

Robert Phair is an excellent speaker and teacher Even though I lack any college level science and also have brain fog, I could hang onto the overall pattern and jist of what he was saying. If you think you understand and can summarize his material better than he can for patients, please give a separate talk.

It is very important for me to understand what Robert Phair has to say, and so to start with, this means hearing him out through the details as he knows and understands them better than anyone. I am sorry to criticize but his information is extremely important to get clear, and a conversational back and forth with interruptions is not the best way to achieve this. .
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I couldn't disagree with you more. I found @Janet Dafoe 's interventions crucial and I hope she continues to do so. I was very thankful for her doing that.
 
BrightCandle

BrightCandle

Senior Member
Messages
1,210
GlassCannonLife said:
I think this is why bcaas help us
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When I first did BCAA's they didn't help. More recently there was a study looking at whether ME/CFS was a form of liver disease and they used BCAAs + some other amino acids, specifically and importantly based on Ron's recent updates Glutamate. I currently take a horribly named/packaged BCAA+ package called Monster that contained the same mix of amino acids they were using in that trial but with a few extras. I think the big part that helps is the Glutamate and that wasn't one of the things they trialed. I find gummy sweets based on gelatin also helps makes me with headaches and energy too and apparently that also builds Glutamate. The problem is that you can't take in Glutamate and get back to normal, at best you'll get 2/7ths the ATP a cycle as you do from glucose or fat so its not an effective energy and it drives more lactic acid and probably other toxic build up too so there is a balance to be found.

For some reason some of us really don't tolerate Glutamate well which is interesting given its theoretical role as proposed in these update videos.
 
Sing

Sing

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New England
bthompsonjr1993 said:
I couldn't disagree with you more. I found @Janet Dafoe 's interventions crucial and I hope she continues to do so. I was very thankful for her doing that.
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This shows how we arent all the same in terms of memory and cognitive abilities. One size does not fit all. I know @JanetDafoe is entirely well intentioned and that her judgement around helping does help some. It is hard to be critical and to hear it, but I think my kind if experience, due to probably worse short term memory, is also valuable to add to the mix.
 
Rufous McKinney

Rufous McKinney

Senior Member
Messages
13,489
BrightCandle said:
I currently take a horribly named/packaged BCAA+ package called Monster
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I had some scary giant orange bottle rather Monstrous, here myself.

The first batch I got was weighlifter, mango flavored with some dextrose I think ; YUCK. But I got used to it and it was sort of helping with "something" as I was getting "worse" daily.

I need to resume the BCAAS. And I need to get the ammonia levels lowered, which is likely tied to how we are burning the AAs.
 
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bthompsonjr1993

Senior Member
Messages
176
bthompsonjr1993 said:
@Janet Dafoe Regarding the second video in the metabolic trap series (the manganese grant video), I was intrigued by Ron saying that the hair tests for CFS patients were coming back showing low manganese and low copper, both of which are very rare in the general population.
So I went and bought a hair analysis test. I sent it to the lab, and my results came back today. All of my levels were normal, except for manganese and copper, which were both low. I can't explain how happy this made me. As CFS patients, I know we are all so sick of tests constantly coming back normal. To have Ron find these abnormalities, say that they could very well play a role in the pathology of the disease, and then to find that I have these deficiencies, was exhilarating. I am feeling so happy knowing that you guys are truly discovering what is going amiss in our bodies. Something that no doctor I have ever seen in person has even come close to being able to do. Thank you thank you THANK YOU!
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To follow this up, there was also a point in the manganese grant video at which Ron said they looked at the patients blood and found that despite having low levels of manganese and copper in the hair, they had normal levels of those things in the blood. Ron said that if it's not in the hair, then it's not getting into your cells. And if its not getting into your cells, then it's useless.
So I went to my doctor and did blood tests for Manganese and Copper. Both came back normal. So again, Ron is spot on for me with his findings. Normal levels in the blood, but low in the hair. I can't wait to see what this grant uncovers.
 
A

Alvin2

The good news is patients don't die the bad news..
Messages
3,068
bthompsonjr1993 said:
To follow this up, there was also a point in the manganese grant video at which Ron said they looked at the patients blood and found that despite having low levels of manganese and copper in the hair, they had normal levels of those things in the blood. Ron said that if it's not in the hair, then it's not getting into your cells. And if its not getting into your cells, then it's useless.
So I went to my doctor and did blood tests for Manganese and Copper. Both came back normal. So again, Ron is spot on for me with his findings. Normal levels in the blood, but low in the hair. I can't wait to see what this grant uncovers.
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This does not make a lot of sense on the surface because if its in the blood then it can reach cells whereas hair is not in circulation.
That said presumably there is some mechanism, binding it in some protein (for example) so it cannot be utilized then excreted may show up as normal in the blood if the binding agent is not tested for/discovered but deficient in the hair.
 
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bthompsonjr1993

Senior Member
Messages
176
Alvin2 said:
This does not make a lot of sense on the surface because if its in the blood then it can reach cells whereas hair is not in circulation.
That said presumably there is some mechanism, binding it in some protein (for example) so it cannot be utilized then excreted may show up as normal in the blood if the binding agent is not tested for/discovered but deficient in the hair.
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If I understand Ron's explanation correctly, just because it is in the blood does not mean that it can get into the cells. Whereas it has to get into the cells to end up in the hair.
 
Methyl90

Methyl90

Senior Member
Messages
282
With reference to the last interventions reported here I wanted to give an account of my experience regarding the topical application of some things that I took oral ...

I can't use any specific lab tests at the moment or even a mineral hair test, so I'll report purely personal feelings.

I fully agree that a high value in the blood or in the range does not mean anything about the actual amount at the cellular level ... very thick indicates precisely that it is not entering.

Topical application for me was the breakthrough with many supplements because I felt the penetration.

I did an experiment with extra virgin olive oil mixed with fat-soluble vitamins applied to the scalp and I did two whole days without symptoms! of course we don't have the same symptoms in this kind of disease ... but what I experienced is amazing.

I take this opportunity (and it is absolutely not Spam) to show you a product that could be interesting, if someone has the chance they could also make it known to Ron and have his opinion.

There are actually more interesting products inside that target mitochondrial health but this could really lead to a global and generic benefit in ME / CFS because it's ATP! These products use very penetrating solvents and work very well when applied to the skin (not harmful).

I hope to receive feedback from you too.

Thank you all!

https://raypeatforum.com/community/threads/cardenosine-liquid-product-for-r-d.22322/
 
Treeman

Treeman

Senior Member
Messages
840
Location
York, England
With regards to hair and low levels of nutrients. I recently had a couple of infections that made my health worse.

I also had a break out of warts. I read this can be caused by low zink. So I took zinc tablets and within a week I could see the warts retreating.

Further reading informs that during infections the body stops successfully absorbing nutrients. Therefore couldn't all of this be linked to persistent infection theory of me/ CFS? (Sorry if this is mentioned before, I couldn't read through it all)
 
G

graceistakenaback

Messages
6
Sing said:
I know you were trying to help patients understand Robert Phair’s talk, but each time you interrupted him, I lost the thread of what he was explaining. None of your interruptions were helpful to me at all. He also did not continue his talk exactly where he left off but seemed derailed by your interruptions, and would resume in a different place. I wish you would save your attempts at summarizing as well as your questions to the end.

Robert Phair is an excellent speaker and teacher Even though I lack any college level science and also have brain fog, I could hang onto the overall pattern and jist of what he was saying. If you think you understand and can summarize his material better than he can for patients, please give a separate talk.

It is very important for me to understand what Robert Phair has to say, and so to start with, this means hearing him out through the details as he knows and understands them better than anyone. I am sorry to criticize but his information is extremely important to get clear, and a conversational back and forth with interruptions is not the best way to achieve this. .
Click to expand...

Your brainfog must not be as bad as mine than. I liked Janet Dafoe's questions. Having Robert Phair do this talk about the Itaconate and having Janet Dafoe host it is the best thing that's happened to the ME/CFS community in a long time. Stop being a Negative Nancy and show some gratitude.
 
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