Ron Davis Update

[Janet Dafoe]

@Janet Dafoe

It seems hair analysis is the wild west, apparently many labs are not repeatable by third party testing.
So i am curious does OMF do the hair analysis in their own lab or have you found a lab that you use that is solid?
If third party can you tell us who it is if we want to get our own analyses done privately?

Also the video mentioned looking for patient volunteers in the future, where will that be advertised?

Doctors Data

 

[BrightCandle]

Another Ron Update, the metabolic trap:

- During an infection Tryptophan transported into immune cells, IDO1 gene converts Tryptophan to Kynurenine. If it gets too high however it blocks the process.

- Don't know what cells could be in this trap.

- Took this cell into yeast, Kynurenine necessary in the yeast or it couldn't grow as was only source of NAD. For small Tryptophan they grew, large amounts they did not grow. Trap thus created in yeast.

- Looking for a way to get it out of the trap. Very easy to see with yeast in a petri dish whether it grew or not. Didn't use a petri dish used a robot.

- Can they find a drug that breaks the trap?

- Investigated every FDA approved drug and they have found quite a few (39)

- But there could be problems, yeast have a drug pump and the FDA drug could be causing those to work instead. Couldn't disable them for this test.

- Deleting some drug pumps but can't do them all. Doing more assays to ensure the yeast its properly being reactivated by solving the trap not a drug pump. Once sure of that they will move onto human cells.

- Have been able to trap human cells but its a lot more work. Don't have a growth assay for this yet.

- But given they have some confidence they could take a low side effect low toxic drug and a volunteer and try one or more of these drugs under their doctors care.

- Lots of problems with their robotics, old software. One part used a palm pilot knock off, had to find a new on ebay. Months of trying to understand and fix the problem. 20 year old robotics. Too expensive to replace it all.

- Doesn't want to release the names of the drugs because patients will try them (you bet your arse we will!), some of them are really interesting apparently.

- Chance some of the yeast results are artifacts, ideally if they can get the short list down to 10 for human cells that will make it easier as 39 is a lot of experimentation. This team is busy with other ME/CFS research so they can't do both and it sounds like the human cell people are specialists and in high demand.

- Could do with more researchers and specialists. Lost their star technician to better pay.

- Funded by a name I can't quite catch, François and patients.

 

[BrightCandle]

I bet we could find volunteers sufficient to test every last one of those 39 drugs and know the answer by October, ethical or not fundamentally the disease is worse. This disease is so awful that dying from a random drug is the least of our concerns. These are already FDA approved so the risk factors are likely less than the ongoing damage to our endothelial system, kidneys, liver, guts and brain anyway at this stage.

 

[lenora]

Thank-you Ron, Janet & Bright Candle. Trytophan, huh? One of the first things ever mentioned some 35 yrs. ago. Lots of things being resurrected. Thanks for everyone's patience and giving the info to us in small doses. Yours, Lenora.

 

[lenora]

Right, Bright Candle until we're actually put on the wrong drug. Things then get worse in a big hurry. Lenora

 

[Rufous McKinney]

I bet we could find volunteers sufficient to test every last one of those 39 drugs and be know the answer by October, ethical or not fundamentally the disease is worse.

Agree.

My life will soon enough be concluding. I'm being protected from a possible FDA approved drug side effect.

I feel we are treated like children. I'm not complaining per se. I sort of expect this to be the "approved official position".

I just don't have another ten years to sit around wondering.

 

[Pendergast]

But given they have some confidence they could take a low side effect low toxic drug and a volunteer and try one or more of these drugs under their doctors care.

This!!

 

[Rufous McKinney]

Right, Bright Candle until we're actually put on the wrong drug. Things then get worse in a big hurry. Lenora

we are the folks who often cannot tolerate a common pill everybody else takes willy nilly.

In my case, the simple and most common drug side effect known is Dry Mouth. And most of the time, I cannot tolerate any Pharmaceutical that has that side effect. I choke. I cannot swallow. I gag.

I should further investigate WHY is this such a common side effect and what mechanisms might be at play.

Meanwhile What was the exact mechanism Ron described for a test of some pill? It sounded like some government approval or permit was needed to allow one person to try one already approved FDA pill which has minimal side effects.

I'll have to re listen to that sentence.

 

[Rufous McKinney]

QUESTION FOR DR. DAVIS:


1) will the test of the FDA drugs be published eventually? if so, is that in the works? time line?

2) chinese traditional herbs: are they still going to also be examined and if so, when might that occur?

 

[bthompsonjr1993]

@Janet Dafoe thank you, this update is incredible! I have one question that maybe you could answer or ask in a future update:

Are the itaconate pathway and the metabolic trap mutually exclusive? Or are they compatible ideas? As in, would one being true mean the other likely isn't? Or can they feed into each other and both be true?

 

[Rufous McKinney]

You have to imagine that Ron deeply understands this.

Yes, I know.

This is part of "how the system works". All of us are stuck with rules, conforming to accepted protocols, etc. We do our best.

Just the shut downs of labs due to COVID was frustrating enough. Somebody's else's arbitrary rule becomes our research cannot move forward.

I would like to know if this research will ever be published. I'm beginning to think maybe it never will be. Instead its sort of preliminary data, it will stay in a drawer, could maybe use to then go forth and run FDA level approval tests for each of the 39 drugs. Wait for that to be published....maybe some of the drugs are related, can be reviewed in groups.

 

[Alvin2]

Doctors Data

Thanks

 

[Rufous McKinney]

Thanks

if you can figure out how that works, do share! (I wandered over there to Doctors Data and quickly was overwhelmed...)

 

[Alvin2]

if you can figure out how that works, do share! (I wandered over there to Doctors Data and quickly was overwhelmed...)

I shall try but don't have too much faith in me, my reliability and ability to figure things out is insanely poor

 

[Alvin2]

@Janet Dafoe

Would Dr Davis consider telling us the names of some of the drugs, if they are FDA approved and already used for other conditions then presumably some patients would have doctors willing to prescribe them and they would not be in any danger since they were safety tested on patients for their original purpose in FDA approval trials?

Also if some ME/CFS patients are already on them then those are data points in your research.

 

[appa]

@Janet Dafoe

Would Dr Davis consider telling us the names of some of the drugs, if they are FDA approved and already used for other conditions then presumably some patients would have doctors willing to prescribe them and they would not be in any danger since they were safety tested on patients for their original purpose in FDA approval trials?

Also if some ME/CFS patients are already on them then those are data points in your research.

some people may have conditions the drugs are normally prescribed for and can get prescriptions for those conditions and then notice if it helps the ME/CFS stuff as well?

 

[Oliver3]

I bet we could find volunteers sufficient to test every last one of those 39 drugs and know the answer by October, ethical or not fundamentally the disease is worse. This disease is so awful that dying from a random drug is the least of our concerns. These are already FDA approved so the risk factors are likely less than the ongoing damage to our endothelial system, kidneys, liver, guts and brain anyway at this stage.

Volunteer here!!

 

[Oliver3]

Yes, I know.

This is part of "how the system works". All of us are stuck with rules, conforming to accepted protocols, etc. We do our best.

Just the shut downs of labs due to COVID was frustrating enough. Somebody's else's arbitrary rule becomes our research cannot move forward.

I would like to know if this research will ever be published. I'm beginning to think maybe it never will be. Instead its sort of preliminary data, it will stay in a drawer, could maybe use to then go forth and run FDA level approval tests for each of the 39 drugs. Wait for that to be published....maybe some of the drugs are related, can be reviewed in groups.

I hear your frustration totally...totally...but let's go easy on the only people who have cared for a decade. I want out of this too...and would sign a waiver to try and speed things up, but at the same time, imagine we didn't have these people on our side

 

[Rufous McKinney]

.but let's go easy on the only people who have cared for a decade.

I have no issues with the OMF research at Stanford. I support it.

I wish I could understand how an actual drug could become available to us for treatments. The process is very unclear to me, but thats my problem not theirs.

Same with one or more diagnostics. How exactly something becomes diagnostic, is very unclear to me.

 

[Rufous McKinney]

I wish I could understand how an actual drug could become available to us for treatments. The process is very unclear to me, but thats my problem not theirs.

I have been reviewing how is it LDN became "somewhat" available. I think I will post a new thread to discuss this as it a broader issue than the Stanford research. Maybe it can serve as an example of.. partial progress.