Questions for Ron Davis

[Reading_Steiner]

A lot of us have started to suspect that viruses might be an important part of the equation, for various reasons, if you look at a thread made by HIP that details what treatments seem to be effective, many of the are antiviral or immune modulators https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/

I know Ron and team have looked for virus particles in the blood or something to see if the body is infected, has he had any further thoughts or ideas about how a common virus could possibly avoid detection by standard tests or more advance ones ? could it simply be a question of sample size and the type of patients being selected ? Also when the big data study was done or what not, were any of the subjects able to be diagnosed with an autoimmune / autoantibody problem as the underlying cause of their ME/CFS as a result of the big data study, or other studies done by stanford / OMF ?

 

[dylemmaz]

@Janet Dafoe

i just wanted to repost my questions in case they got lost in previous messages

1. how long does ron think it could take to test all fda approved drugs on the yeast once the robots are fixed? if ron had to give a very rough estimate? last youtube update he said it would be a “fast and swift” process. does this mean a year, a few years, a few months?
2. the second thing i have been curious about has been if the robots are fixed or not?

and again, thank you so much

 

[Rufous McKinney]

then they will move toward testing herbs. said he is in contact with a distributor in (i believe) china.

From being engaged in chinese traditional medicine for a very long time,

I would really encourage Dr. Davis to confer with an chinese herbalist expert

(- well I have an expert here in California I can recommend -)

Chinese herbs we obtain in California come from trusted distributors in California who do testing and work with growers to ensure product quality. So thats important to know because nobody should be taking untested herbs.

Next: I can assure you Stanford would get further quicker working with an expert to prioritize what would be tested. They used 1000s of herbs. And single herbs are never used, so if HERB X corrects the signal- the next issue will be how to take HERB X and that means- combining it. This is not how western medicine works but its how a TREATMENT using a chinese herb- would be introduced.

@Janet Dafoe ..thank you, if you can convey this info to Ron, I can provide you with a specific expert I trust- or he maybe able to recommend- an appropriate person he knows that has the level of expertise.

I also would offer to cover the cost of a conference call between them to discuss this.

 

[Strawberry]

. Ron is just really not wanting to talk about it yet because he doesn’t want patients experimenting on themselves with possible harm.

TOO LATE!!!

;-) Thank you for all you do for us. I don’t know how you keep up this juggling act! I wish you and Ron the best health. So we never lose either of you.

 

[Martin aka paused||M.E.]

@Janet Dafoe Joshua Leisk has done a “paper” in which he proposes that latent herpes viruses are responsible for ME / CFS. He describes it “as a simultaneous α-ketoglutarate dehydrogenase (α-KGDH) and pyruvate dehydrogenase (PDH) deficiency, with degraded beta-adrenergic signalling cascade and impaired hepatic gluconeogenesis, phasic hyperlactatemia and hyperammonemia - as caused by herpesviridae-mediated antibodies and latent cell burden.”
He also told us he is already in contact with you.

What does Ron think about it?

And I don't want to bother you too much but as I think this is highly important for many of us: Is Ron aware of the fact that Abilify stops working in some (1/6) of us after some months?

Thank you so much and much love for you and your family!

 

[Janet Dafoe]

@Janet Dafoe Joshua Leisk has done a “paper” in which he proposes that latent herpes viruses are responsible for ME / CFS. He describes it “as a simultaneous α-ketoglutarate dehydrogenase (α-KGDH) and pyruvate dehydrogenase (PDH) deficiency, with degraded beta-adrenergic signalling cascade and impaired hepatic gluconeogenesis, phasic hyperlactatemia and hyperammonemia - as caused by herpesviridae-mediated antibodies and latent cell burden.”
He also told us he is already in contact with you.

What does Ron think about it?

And I don't want to bother you too much but as I think this is highly important for many of us: Is Ron aware of the fact that Abilify stops working in some (1/6) of us after some months?

Thank you so much and much love for you and your family!

Yes Ron has read Joshua’s paper and is planning on speaking with him soon. I know he has reservations about thinking that everybody has latent herpes. We would certainly need to have evidence of that. As for the rest of the theory I don’t know what he thinks and it will be interesting to hear their conversation.

Yes Ron is aware that some people don’t have sustained effects of Abilify.

 

[Martin aka paused||M.E.]

Yes Ron has read Joshua’s paper and is planning on speaking with him soon. I know he has reservations about thinking that everybody has latent herpes. We would certainly need to have evidence of that. As for the rest of the theory I don’t know what he thinks and it will be interesting to hear their conversation.

Yes Ron is aware that some people don’t have sustained effects of Abilify.

Thanks a lot for your reply

 

[Janet Dafoe]

From being engaged in chinese traditional medicine for a very long time,

I would really encourage Dr. Davis to confer with an chinese herbalist expert

(- well I have an expert here in California I can recommend -)

Chinese herbs we obtain in California come from trusted distributors in California who do testing and work with growers to ensure product quality. So thats important to know because nobody should be taking untested herbs.

Next: I can assure you Stanford would get further quicker working with an expert to prioritize what would be tested. They used 1000s of herbs. And single herbs are never used, so if HERB X corrects the signal- the next issue will be how to take HERB X and that means- combining it. This is not how western medicine works but its how a TREATMENT using a chinese herb- would be introduced.

@Janet Dafoe ..thank you, if you can convey this info to Ron, I can provide you with a specific expert I trust- or he maybe able to recommend- an appropriate person he knows that has the level of expertise.

I also would offer to cover the cost of a conference call between them to discuss this.

Thank you very much for this. I know that Ron is aware of it. It is also true in Ayurvedic medicine and Native American medicine. He has good contacts in India and I’m not sure about China but I am sure he isn’t proceeding with some simple theory of herbs. If he doesn’t have one already, I’m sure he would be interested in your contact.

 

[Janet Dafoe]

seems doubtful to me that its low dose LDN - its helped me but thats not a pill that cures this. Its a symptom intensity reducer.

No it’s not LDN. Whitney has been on LDN for a long time. Frankly, I don’t know if it’s helping or not.

 

[Alvin2]

No it’s not LDN. Whitney has been on low-dose LDN for a long time. Frankly, I don’t know if it’s helping or not.

Wasn't sure if you saw my post earlier so i quoted it below:

Thanks so much for this and also please tell Ron how much we appreciate all his hard work.

My questions are will the FDA drugs also be tested on the original pre yeast nanoeedle immune cells/salt?

The Thrombospondin results from Dr Moreau in Montreal, is there more research underway on this?
Was the positive results linearly dose dependent or was a specific minimum dose needed to see any effect?
Is there any way to determine who will benefit from Pregabalin/Gabapentin?

Also not sure if you saw this post of mine from another thread, in case its helpful:

@Ben H @Janet Dafoe

When i was researching Collagen for bone density i came across these studies which suggests Tryptophan can be intentionally depleted in humans.

Acute tryptophan depletion in humans: a review of theoretical, practical and ethical aspects
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3756112/

Pharmacokinetics of acute tryptophan depletion using a gelatin-based protein in male and female Wistar rats
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2705715/

 

[TrustTheProcess]

i am so incredibly grateful for you doing this janet. i have been obsessing over the metabolic trap theory as it’s the most promising and inspiring piece of research i have read. it has been on my mind every day for the last 4 months and really about the only thing giving me hope so seeing these questions and answers will be quite a joy for me. there have been only a few questions on my mind lately.

1. how long could it take to test all fda approved drugs on the yeast cells once the robots are fixed? if ron had to give a very rough estimate?
2. the second thing i have been curious about has been if the robots are fixed or not, but i know you said that you aren't sure so you don’t need to bother ron with that question!

edit: i guess a 3rd question might be, if whitneys newest treatment ends up working well for him, will the testing that ”made him worse” but helped guide the treatment be available to us shortly after? is it something accessible like a blood draw?

thank you so so much!!

These are my questions as well!

 

[perrier]

I would like to thank Dr. Janet Dafoe for all HER work also. This is not a joke--being a caregiver for a severely ill son, supporting and helping a husband who is working around the clock, staying in contact with severely ill patients all over the world, doing interviews, speaking to researchers, bringing research to the attention of Dr Davis, and I know there is much more... Where is there time for anything else? Where is there time for oneself? One's own career? So, thank you Janet, and while I am at it: thank you to all the other caregivers--for this group is also little attended to because this illness is so severe, so cruel, so exacting. Thanks Janet for doing this thread.

 

[Martin aka paused||M.E.]

I would like to thank Dr. Janet Dafoe for all HER work also. This is not a joke--being a caregiver for a severely ill son, supporting and helping a husband who is working around the clock, staying in contact with severely ill patients all over the world, doing interviews, speaking to researchers, bringing research to the attention of Dr Davis, and I know there is much more... Where is there time for anything else? Where is there time for oneself? One's own career? So, thank you Janet, and while I am at it: thank you to all the other caregivers--for this group is also little attended to because this illness is so severe, so cruel, so exacting. Thanks Janet for doing this thread.

@Janet Dafoe I agree: to me you are no less heroic than Ron! Thanks for your contribution!
Also and especially to Ron for his tireless fight for Whitney, for all of us. OMF is the bulwark of hope, so thanks also go to Linda who is fighting for every single dollar.
You are our reason to hold on to the belief that one morning the sun will shine again.
Thank you!

 

[Boba]

@Janet Dafoe I agree: to me you are no less heroic than Ron! Thanks for your contribution!
Also and especially to Ron for his tireless fight for Whitney, for all of us. OMF is the bulwark of hope, so thanks also go to Linda who is fighting for every single dollar.
You are our reason to hold on to the belief that one morning the sun will shine again.
Thank you!

Like really the only hope!

 

[Janet Dafoe]

@dylemmaz

1. how long could it take to test all fda approved drugs on the yeast cells once the robots are fixed? if ron had to give a very rough estimate?

Ron: "I am guessing about a year, but I am working on a way to do it faster."

2. the second thing i have been curious about has been if the robots are fixed or not, but i know you said that you aren't sure so you don’t need to bother ron with that question!

Ron: "No they are not fixed yet. They are old and we are having trouble finding all the parts we need. We are hopeful we can find them, but if we can't we will figure out another way to do it."

edit: i guess a 3rd question might be, if whitneys newest treatment ends up working well for him, will the testing that ”made him worse” but helped guide the treatment be available to us shortly after? is it something accessible like a blood draw?

Ron: "We are trying to figure out a way to do the test in a way that doesn't make people sicker."

thank you so so much!!

 

[Janet Dafoe]

My questions are will the FDA drugs also be tested on the original pre yeast nanoeedle immune cells/salt?

Ron: "We will do this when we can get a new electronics control box fabricated."

 

[Janet Dafoe]

The Thrombospondin results from Dr Moreau in Montreal, is there more research underway on this?
Was the positive results linearly dose dependent or was a specific minimum dose needed to see any effect?
Is there any way to determine who will benefit from Pregabalin/Gabapentin?

It would be best to ask Dr. Moreau these specific questions.

 

[dylemmaz]

@dylemmaz

1. how long could it take to test all fda approved drugs on the yeast cells once the robots are fixed? if ron had to give a very rough estimate?

Ron: "I am guessing about a year, but I am working on a way to do it faster."

thank you janet!!!! and thank you ron!!! truly heros, both of you. i hope a virtual hug is acceptable, because i am forever grateful for the both of you and would like to pass on a hug. *hug*

is it okay if i share this outside of phoenix rising or should the answer to those questions remain here?

thank you again, so much,
dylan

 

[Janet Dafoe]

As Ron is working on a new Abilify I wanted to politely ask, if he is aware of the tolerance problem and if you could give us an inside why Abilify might work for ME/CFS.

Yes, Ron is aware that for some people Ability stops working. Ability might work because it regulates dopamine, and at low doses seems to increase it, and balances dopamine and serotonin. It also is anti-inflammatory.

 

[Janet Dafoe]

This is the chat


@Janet Dafoe This is great! Thank you for your update!
For some of us Abilify stops working after some time. Nobody knows the prevalence as most people are just starting right now. In the Facebook group Poll it seems to be 1 out of 6. For me it took four months until it stopped. We are discussing possible reason (desensitisation of dopamine or serotonin receptors for example), but we honestly didn’t come far with it, especially with solutions.
As Ron is working on a new Abilify I wanted to politely ask, if he is aware of the tolerance problem and if you could give us an inside why Abilify might work for ME/CFS.

Thanks a lot in advance,
Martin
Ps.: how is Whitney doing?

Whitney's bad reaction to the test (May 14) lasted at least 3 weeks and then slowly started to wear off. He has improved now so that he can do a few things again, but is not up to his previous level.