Questions for Ron Davis

[Janet Dafoe]

Moderator Note: The following 65 posts were moved from this thread: https://forums.phoenixrising.me/threads/it-seems-ron-davis-may-have-a-new-potential-treatment.84151/ in order to ensure that the questions and answers @Janet Dafoe has graciously offered to transmit to and from Ron Davis are easy to access and read. We ask that all of us work hard to keep this thread on topic; if you want to discuss possibilities and potentialities of what Ron is up to, go to the original thread please. This one will be moderately tightly to assure that it stays focused.

Here’s a little update on a few things. Unfortunately, the nano needle is stuck because Rahim is now an assistant professor at UC Irvine and has submitted three grants all of which have been turned down for ridiculous reasons.As soon as funding can be procured Ron and Rahim will be on this immediately.

The work on the yeast and human cells being put into the metabolic trap is continuing and is very promising. They are proceeding to work out the procedures for testing the FDA drugs. The main person working on the yeast with Ron is excellent and independent and works hard every single day making progress on this. It’s gotten held up because of robots and those are getting repaired. I’m not sure if that’s done yet.

The new treatment possibilities involve doing a deep dive into metabolic pathways. Ron is just really not wanting to talk about it yet because he doesn’t want patients experimenting on themselves with possible harm. They are making progress with this.

it is true that some have said above that Ron has many irons in the fire. He’s trying to follow as many leads as he can both for figuring out causes and for treatments. I promise you he is so busy and he works on it all day long every day and due to the lack of funding he also spends a lot of time trying to get money. I watch him all day long every day on zoom calls and when I ask him about it he just gets so frustrated because he’s working as hard as he can and if he does something that I ask him to do it means he’s not doing something else that he also considers really important. In fact to even dreams about it so you could say that he’s working 24 seven. Sometimes he gets ideas in his dreams that turn out to be useful.

We continue to be very hopeful and appreciate all your ideas and support.

i’m going to try something a little risky here. I’m going to offer to try to answer your questions by asking Ron as often as I can. This is risky because I know he won’t be able to answer all of them. He gets really really tired after dinner and needs to just chill and think. But I will try. So please judiciously post some of your questions and I’ll see what I can do.

 

[dylemmaz]

i’m going to try something a little risky here. I’m going to offer to try to answer your questions by asking Ron as often as I can. This is risky because I know he won’t be able to answer all of them. He gets really really tired after dinner and needs to just chill and think. But I will try. So please judiciously post some of your questions and I’ll see what I can do.

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!!

 

[Alvin2]

i’m going to try something a little risky here. I’m going to offer to try to answer your questions by asking Ron as often as I can. This is risky because I know he won’t be able to answer all of them. He gets really really tired after dinner and needs to just chill and think. But I will try. So please judiciously post some of your questions and I’ll see what I can do.

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/

 

[raghav]

Thanks @Janet Dafoe Much appreciated. I know how complicated these million dollar equipement can be in terms of just the user's manual. As others have said please give us frequent updates. It is our IV drip that keeps us alive and not contemplate the unthinkable.

 

[perrier]

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?


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:

Alvin, I'll just insert myself here because I am not sure about the two drugs you brought up. What was your thinking in asking about Lyrica and Gabapentin? Are these being proposed? Many ME patients have tried both of these drugs over the years, and they have never touched the core issue: exertion intolerance followed by PEM. Thanks in advance.

 

[Alvin2]

Alvin, I'll just insert myself here because I am not sure about the two drugs you brought up. What was your thinking in asking about Lyrica and Gabapentin? Are these being proposed? Many ME patients have tried both of these drugs over the years, and they have never touched the core issue: exertion intolerance followed by PEM. Thanks in advance.

I started a thread about it, i have a few studies to add which i am currently working on
https://forums.phoenixrising.me/threads/have-pregabalin-prescription-should-i-try-it.83770/

 

[Martin aka paused||M.E.]

This is the chat

Here’s a little update on a few things. Unfortunately, the nano needle is stuck because Rahim is now an assistant professor at UC Irvine and has submitted three grants all of which have been turned down for ridiculous reasons.As soon as funding can be procured Ron and Rahim will be on this immediately.

The work on the yeast and human cells being put into the metabolic trap is continuing and is very promising. They are proceeding to work out the procedures for testing the FDA drugs. The main person working on the east with Ron is excellent and independent and works hard every single day making progress on this. It’s gotten held up because of robots and those are getting repaired. I’m not sure if that’s done yet.

The new treatment possibilities involve doing a deep dive into metabolic pathways. Ron is just really not wanting to talk about it yet because he doesn’t want patients experimenting on themselves with possible harm. They are making progress with this.

it is true that some have said above that Ron has many irons in the fire. He’s trying to follow as many leads as he can both for figuring out causes and for treatments. I promise you he is so busy and he works on it all day long every day and due to the lack of funding he also spends a lot of time trying to get money. I watch him all day long every day on zoom calls and when I ask him about it he just gets so frustrated because he’s working as hard as he can and if he does something that I ask him to do it means he’s not doing something else that he also considers really important. In fact to even dreams about it so you could say that he’s working 24 seven. Sometimes he gets ideas in his dreams that turn out to be useful.

We continue to be very hopeful and appreciate all your ideas and support.

i’m going to try something a little risky here. I’m going to offer to try to answer your questions by asking Ron as often as I can. This is risky because I know he won’t be able to answer all of them. He gets really really tired after dinner and needs to just chill and think. But I will try. So please judiciously post some of your questions and I’ll see what I can do.

@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?

 

[Sushi]

i’m going to try something a little risky here. I’m going to offer to try to answer your questions by asking Ron as often as I can. This is risky because I know he won’t be able to answer all of them. He gets really really tired after dinner and needs to just chill and think. But I will try. So please judiciously post some of your questions and I’ll see

Thanks so much Janet for your update. I am sure you know how much it is appreciated. As for patient questions, a Dr. Markov from Kyiv is posting here with what he feels is the correct and effective treatment for ME/CFS, reporting nearly 100% remission. Of course patients are interested and would really value hearing Ron’s take on it.

He has just posted his answers to patient questions (https://forums.phoenixrising.me/thr...gnosed-and-treated.84158/page-10#post-2345708) and if you skim his very long post, you will easily get the gist of his approach—or perhaps someone with a mind for science could summarize it here in a couple of bullet points. @Hip?
Again, thank you, Ron and your whole devoted team.

 

[Hip]

or perhaps someone with a mind for science could summarize it here in a couple of bullet points. @Hip?

OK, I will give a quick summary for @Janet Dafoe:

Dr Igor Markov from Kyiv, Ukraine has a theory that ME/CFS is caused by a chronic (typically asymptomatic) bacterial kidney infection, which he says constantly pumps bacterial endotoxin (lipopolysaccharide) and/or bacterial exotoxins into the bloodstream, and has a treatment which he says is curative for nearly all ME/CFS patients.

He says antibiotics are cannot effectively eradicate this kidney infection, but stimulating the immune system to fight the infection is effective, and he uses a medical technology that dates back to the pre-antibiotic era called autovaccines in order to stimulate such an immune response.

Autovaccines are used today to treat infections in livestock. Autovaccines are tailor-made for each animal or person by culturing the bacteria infection in vitro, then killing those bacteria, and turning them into a vaccine. The vaccine then trains and stimulates the immune system to fight those particular bacteria.

In the PR thread, Dr Markov claims to have treated 4288 ME/CFS patients with this autovaccine therapy, with the autovaccines made in his clinic by culturing bacteria found in the urine samples of the patients. And he claims 92.7% achieved a full recovery.

This recovery rate seems very hard to believe, and the question is whether Dr Markov is really treating ME/CFS patients as we would recognize them, or perhaps just treating patients with a non-specific fatiguing illness.

Markov uses the CDC Fukuda definition for ME/CFS, but says in this post that he does not know if his protocol will be effective for bedridden patients. Which suggests he may be treating ME/CFS patients at the milder end of the spectrum.

In that post he also says that autovaccine treatment time (time to recovery) is 6 months to 3 years, with patients who have been ill longer requiring longer rounds of autovaccine therapy to get results.



My own thoughts are that while the idea of a hidden kidney infection is interesting, it's also possible that these autovaccines are having an antibacterial effect against bacteria in the intestines, which might then help address underlying colon dysbiosis or small intestine bacterial overgrowth (SIBO), which have both been linked to ME/CFS.

 

[lenora]

Thank-you Janet Dafoe and Ron Davis. I personally feel that you are doing everything you possible can for not just Whitney, but for all of us. You have a lot of things working against you at home and handle it all so well from where I sit.

I do get annoyed when there is what seems to be nitpicking that goes on. Of course Ron doesn't have time to follow up on every research question....perhaps someone could volunteer to help him in that regard.

As far as Dr. Markov goes, I agree with Hip, If mild/moderate patients were used for the kidney problem, then they'll have a different immune response than those who are most seriously ill. Besides, the number of patients he used isn't exactly huge (and I understand that we'll begin with smaller groups).

Still, as I suggested before....see what other researchers are doing and let Dr. Davis get on with his work. None of us have/has special status as patients. We should remember that. Thanks again, Janet. Yours, Lenora.

 

[aquariusgirl]

i’m going to try something a little risky here. I’m going to offer to try to answer your questions by asking Ron as often as I can. This is risky because I know he won’t be able to answer all of them. He gets really really tired after dinner and needs to just chill and think. But I will try. So please judiciously post some of your questions and I’ll see what I can do.

Any lessons to be learned from the successes and failures of treatment with Disulfiram? Obviously, a bunch of other researchers are looking at it, but it seems to deliver remarkable results for many patients after years of treatment failures with antibiotics ,herbs, etc.. High negatives though, in terms of side effects, it should be said.

 

[Janet Dafoe]

Any lessons to be learned from the successes and failures of treatment with Disulfiram? Obviously, a bunch of other researchers are looking at it, but it seems to deliver remarkable results for many patients after years of treatment failures with antibiotics ,herbs, etc.. High negatives though, in terms of side effects, it should be said.

Ron does not know why this would help ME/CFS patients. It is one of the FDA approved drugs that will be tested on the yeast model.

 

[Janet Dafoe]

Ron Davis did say he wants FDA approval. What happened to the East African Sleeping Sickness? In the Jungle of Africa, they use a paper blot to diagnose it there but he did say the East type is very hard to pick up a positive like the West type

Ron says: we have made probes for all the trypanosomes. There are some trypanosomes in the US. But we have not yet tested patients with our probes. Because Covid stopped us from getting patients blood.

 

[Janet Dafoe]

I thought it was called the 'Open' Medicine Foundation?

Ron is more open about data and results than any other scientist working on this disease. He puts things and ideas out there before publication. He is judicious about doing it too early because he does not want patients experimenting on themselves when it could harm them. I appreciate people being frustrated at how slow this is, but I don’t appreciate the criticisms like this when he’s already more open than anybody else. He makes a big effort to put a lot out there and then he gets criticized that it’s not enough. It’s never enough until we have the answers, right?

 

[Aidan Walsh]

Ron says: we have made probes for all the trypanosomes. There are some trypanosomes in the US. But we have not yet tested patients with our probes. Because Covid stopped us from getting patients blood.

ok thanks

 

[Aidan Walsh]

Ron is more open about data and results than any other scientist working on this disease. He puts things and ideas out there before publication. He is judicious about doing it too early because he does not want patients experimenting on themselves when it could harm them. I appreciate people being frustrated at how slow this is, but I don’t appreciate the criticisms like this when he’s already more open than anybody else. He makes a big effort to put a lot out there and then he gets criticized that it’s not enough. It’s never enough until we have the answers, right?

Sorry, I did not mean it as criticism, it is more frustrating than anything else. We all appreciate his efforts & yes things can jeopardize Publications as well

 

[Cher Noreen]

He puts things and ideas out there before publication. He is judicious about doing it too early because he does not want patients experimenting on themselves when it could harm them. I

Thank you Janet for all that you're doing and for the time and energy your entire family gives to our community. Back when Ron started collaborating with OMF, I had my first ray of hope that we would make progress. It may be slower than we wish, but there's much more of it than I expected.

Personally, I appreciate Ron's hesitation in giving us too many details. I don't know if I could resist trying things myself, and I definitely don't have the background or brain bandwidth to do it well. Certainly not in a way that is beneficial for the whole community.

Yours and Ron's commitment to sharing what you learn with us, to giving us regular updates, just to keep us hopeful and encouraged, is so appreciated. Thank you for being generous with your time for us strangers.

 

[max_yazhbin]

@Janet Dafoe, Ron mentions that if there were some natural treatments for this illness they'd look into testing that. What people or organizations has the OMF team looked at to help with this line of inquiry? Have they looked into naturopathic or ethnobotanical people?

 

[dylemmaz]

@Janet Dafoe, Ron mentions that if there were some natural treatments for this illness they'd look into testing that. What people or organizations has the OMF team looked at to help with this line of inquiry? Have they looked into naturopathic or ethnobotanical people?

im not sure if you know this or not but in one of rons recent update videos he said if no fda approved medications fix the metabolic trap in the yeast then they will move toward testing herbs. said he is in contact with a distributor in (i believe) china.

 

[lenora]

Ron is more open about data and results than any other scientist working on this disease. He puts things and ideas out there before publication. He is judicious about doing it too early because he does not want patients experimenting on themselves when it could harm them. I appreciate people being frustrated at how slow this is, but I don’t appreciate the criticisms like this when he’s already more open than anybody else. He makes a big effort to put a lot out there and then he gets criticized that it’s not enough. It’s never enough until we have the answers, right?

Many of us appreciate the efforts of your entire family, Whitney included. Please pass this along as sometimes all one hears are the negative comments. Yours, Lenora.