Ron Davis Update

[WhiteLynx]

You know when Ron's research is at a dead end when Whitney is trying a random protocol from the Internet out of desperation. (BornFree protocol) Sorry, but it seems to me that we can forget about Ron's research.

 

[Dude]

You know when Ron's research is at a dead end when Whitney is trying a random protocol from the Internet out of desperation. (BornFree protocol) Sorry, but it seems to me that we can forget about Ron's research.

I had exactly the same thought. Specifically, this Bornfree protocol seems like just another attempt by an IT nerd who believes they have deciphered and understood the disease by piecing together countless unrelated studies in order to try to cure a complex illness with supplements. Just the number of diseases that are supposedly treatable with it sets off all my alarm bells.

While I respect Ron Davis's work, he has certainly contributed a lot to raising awareness and creating a more comprehensive understanding of this disease, i wouldn't presume to evaluate his current work. However, purely from a gut feeling, I believe there are other hypotheses that I trust more to lead to a viable therapy.

 

[JES]

Nevertheless, it will be interesting to see if Whitney gets any reaction from this protocol. Hopefully not for the worse. As far as I recall there haven't been any severe patients that have notably improved from it.

Speaking of Ron's research, I'd like to know more about all the loose ends and what happened to them. Nanonedle, metabolic trap, manganese and the blood scan for all known bacteria, fungi, parasites and viruses. It would be interesting to know what of this stuff is still in the pipeline and what turned out to be a dead end.

 

[junkcrap50]

Speaking of Ron's research, I'd like to know more about all the loose ends and what happened to them. Nanonedle, metabolic trap, manganese and the blood scan for all known bacteria, fungi, parasites and viruses. It would be interesting to know what of this stuff is still in the pipeline and what turned out to be a dead end.

"Something in the blood" is perhaps the most important finding and lead. Health cells + CFS blood = CFS cells. And CFS cells + healthy blood = healthy cells. So, why has there been nothing about the "something in the blood" for like 6 or + years now. No doubt it will be more complicated than just the "something" being a contaminant. But it ought to point/lead more directly to origin of the pathology.

 

[BrightCandle]

I had a good response to Joshua's earlier protocol, a few of us did at the time (2020) before the thread was deleted and Joshua was banned from Phoenix Rising. There are a number of people on the latest version of this who are getting the sort of improvements I saw as well. But like many of these things they don't seem to sustain and I lost my benefits over a period of 6 months.

It is very telling that Whitney is doing the Bornfree protocol, that bodes poorly for his confidence in research.

 

[lenora]

OK.....Ron Davis hasn't found "the answer," but this man has certainly tried and a round of applause should be heard by him. Also, his wife for caring for Whitney and being a vital part of this Board until Cort took over.

I'm probably the same age as the Davis's (77), give or take, and do you have any idea how much energy is sucked up by doing this? And also caring for Whitney?

There are a lot of theories out there, but no proof....at least Ron has proven that certain things aren't the cause. I'll start clapping now....a fine man who has tried, it's more than most of us can say. Yours, Lenora

 

[Oliver3]

You know when Ron's research is at a dead end when Whitney is trying a random protocol from the Internet out of desperation. (BornFree protocol) Sorry, but it seems to me that we can forget about Ron's research.

Why? We don't know anything. Whitney messaged me two months ago saying his dad is near to treatments.
Take that how you will

 

[forestglip]

Speaking of Ron's research, I'd like to know more about all the loose ends and what happened to them. Nanonedle, metabolic trap, manganese and the blood scan for all known bacteria, fungi, parasites and viruses. It would be interesting to know what of this stuff is still in the pipeline and what turned out to be a dead end.

As far as the nanoneedle, that work is being continued by another group:

In 2019, Professor Ron Davis from America, reported that researchers had developed a nanoelectronics test which could detect an impedance in white blood cells taken from people with ME/CFS.

They felt their findings could represent a diagnostic marker, but since then, there hasn’t been any further research in this area. The ME Association and ME Research UK have jointly funded a new 12-month study that will build upon these initial findings.

News article from four days ago:

Using blood samples from the UKMEB, the researchers are now investigating this potential biomarker with improved techniques and a larger patient cohort, including those with mild/moderate and severe forms of ME/CFS. So far, they have received more than 100 blood samples and have analysed the electrical properties of 42.

“Based on the results we have so far, we are very close to having a biomarker for diagnosis. Our results so far show a high degree of accuracy and are able to distinguish between ME/CFS and other diseases,” said Labeed.

 

[DonPepe]

You know when Ron's research is at a dead end when Whitney is trying a random protocol from the Internet out of desperation. (BornFree protocol) Sorry, but it seems to me that we can forget about Ron's research.

I don’t know how you extrapolate this from Whitney going on a diet which looks like an attempt to reset his metabolism.

I don’t think Ron is the type of person who runs out of ideas. He has my full support in what is an unbelievable complex and difficult task.

 

[JES]

I don’t know how you extrapolate this from Whitney going on a diet which looks like an attempt to reset his metabolism.

I don’t think Ron is the type of person who runs out of ideas. He has my full support in what is an unbelievable complex and difficult task.

I follow Whitney on X. He is trialing Joshua's protocol and his probiotics in specifics, don't know about any diet. He reported getting worse initially, but according to Joshua "getting worse before getting better" is expected. The problem is that this is a kind of a non-answer because you may just as well get worse and never get better.

I trialed a lot of immune stimulating supplements and probiotics and what they invariably ended up doing was making me (temporarily) feel more sick due to amplifying whatever immune dysfunction I have. The problem is that I never reached a point where I would start to feel better, but instead only felt briefly better after stopping "immune stimulating supplement X" until symptoms returned back to baseline.

 

[DonPepe]

I follow Whitney on X. He is trialing Joshua's protocol and his probiotics in specifics, don't know about any diet. He reported getting worse initially, but according to Joshua "getting worse before getting better" is expected. The problem is that this is a kind of a non-answer because you may just as well get worse and never get better.

I trialed a lot of immune stimulating supplements and probiotics and what they invariably ended up doing was making me (temporarily) feel more sick due to amplifying whatever immune dysfunction I have. The problem is that I never reached a point where I would start to feel better, but instead only felt briefly better after stopping "immune stimulating supplement X" until symptoms returned back to baseline.

I’ve tried a lot of similar stuff and I’ve had the exact same response as you. I believe it will take a chemical intervention to move the needle in a positive way. A chemical that has not yet been formulated or utilised for the treatment of ME.

 

[civicko]

I had a good response to Joshua's earlier protocol, a few of us did at the time (2020) before the thread was deleted and Joshua was banned from Phoenix Rising. There are a number of people on the latest version of this who are getting the sort of improvements I saw as well. But like many of these things they don't seem to sustain and I lost my benefits over a period of 6 months.

It is very telling that Whitney is doing the Bornfree protocol, that bodes poorly for his confidence in research.

Why was he banned? It's model makes sense, althought I'm uneducated in the matter there seems to be more and more research on IFN-gamma dysregulation lately.

 

[Judee]

It is very telling that Whitney is doing the Bornfree protocol, that bodes poorly for his confidence in research.

Not really. We're all waiting for research and researchers to figure out the solution to this but we're also still trying other things in the meantime because everyone here is desperate to improve. So why shouldn't he be trying to improve while waiting too?

 

[junkcrap50]

A small update: Ron Davis gave a talk at Invest in ME and disclosed some new info. Here is the video:

A summary of the talk with points copied from people on twitter (mix of people). Discussion of the Itaconate Shunt is at the end, starts at 23:14.

In his model it all starts with infection or trauma which can reactivate latent viruses like EVB, HHV6, CMV. They found 4 out of 10 patients from car accidents had viral reactivation.

This leads to mitochondrial fragmentation (F), oxidative stress is activated (A), and ATP production is reduced A R). We can call this the "FAAR" pattern.

Oxidative stress lowers BH4 and this results in reduction in Nitric Oxide (NO) and because of LOW iron, manganese, and copper we get caught into a feedback loop.

At the same time our Kreb's cycle starts to consume more amino acids than it needed before and this turns on the itaconate shunt.

If we could find a way to increase BH4, a way to increase NO, and a way to turn off or unblock the shunt by finding a molecule that can shut down the pathway that would be 'gold'.

They developed a test to measure BH2 and BH4 accurately, which was very difficult. And are starting testing ME/CFS patient's BH4 levels, so far only 1 patient.

Other cool and helpful directions:
*increasing dopamine can help somewhat (Abilify can work but this also makes me think what else could work?)
*Kuvan (prescription BH4) has seen mixed results in PwME - it may alter BH2:BH4 ratio, which may be important
*we really need to Optimize the minerals (Born Free has the best re-mineralization protocol IMO).
*women may need a LOT more anti-oxidants than the guys (based on the Davis' Labs 'radical' results

EDIT: ADDED: "There's a group at University of Utah working for [sic] a FDA approved drug or natural product that will block this step [the itaconate shunt]...and remove the lack of energy people have."

U of Utah researchers have genetically engineering zebra fish so that the itaconate shunt is triggered - what they believe may be going on in ME/CFS. The fish swim slowly as expected, and they're now using this as a model to work out how to unblock this metabolic trap.

 

[Mary]

A summary of the talk with points copied from people on twiter (mix of people)

@junkcrap50 - thanks so much for pulling all of this together!

"They've genetically engineering zebra fish so that the itaconate shunt is triggered - what they believe may be going on in ME/CFS. The fish swim slowly as expected, and they're now using this as a model to work out how to unblock this metabolic trap."


Are you saying that Ron Davis et al. are engineering zebra fish? (for some reason I'm not able to highlight text and put it in a quote box)

 

[bad1080]

*increasing dopamine can help somewhat (Abilify can work but this also makes me think what else could work?)

in this thread dopamine is being discussed: https://forums.phoenixrising.me/threads/pramipexole-put-my-cfs-me-into-remission.92410/

 

[junkcrap50]

@junkcrap50 - thanks so much for pulling all of this together!

"They've genetically engineering zebra fish so that the itaconate shunt is triggered - what they believe may be going on in ME/CFS. The fish swim slowly as expected, and they're now using this as a model to work out how to unblock this metabolic trap."


Are you saying that Ron Davis et al. are engineering zebra fish? (for some reason I'm not able to highlight text and put it in a quote box)

Sorry no, University of Utath researchers. I edited the comment so it's clearer. University of Utah researchers are the ones who have created/working with the genetically modified zebra fish. It seems like working with zebra fish and engineering them genetically is a common research tool. But they created a CFS model by locking the fish into the itaconate shunt.

Here's the full quote from Ron:
"[A group at University of Utah] are also making.. uh.. they're doing a wonderful job on this. They're also making a zebra fish model. So, zebra fish are very easy to work with - they're very tiny little fish - and you can genetically engineer them. So, they're genetically engineering them to do some of the chemistry here, and they're doing it so they activate the itaconate shunt, genetically. And when they do that, [the zebra fish] swim slow. So they have shown they can fatigue the fish by this pathway. This gives them a chance to find how you unblock it. So that's encouraging."

 

[DonPepe]

I think at least with me dopamine is key. Both mestinon and abilify are the only drugs or supplements along with lorazepam that have moved the needle, after trying upwards of 150.

Mestinon and Abilify can both have a dramatic effect on dopamine.

I have anti-epileptic zonegran in my cupboard. At low doses it can also help regulate dopamine and has been trialled in Parkinson’s at low dose with some success. I’m too frightened to try it at the moment because of reports of very unpleasant side effects at higher doses.

 

[DonPepe]

From AI

Tetrahydrobiopterin (BH4) is a crucial cofactor in the synthesis of dopamine, as it is required for the activity of tyrosine hydroxylase, the enzyme that converts tyrosine to L-DOPA, a precursor of dopamine[1][2][4]. BH4 deficiency can lead to reduced dopamine levels, contributing to disorders like Parkinson's disease and dopamine-responsive dystonia[2][3]. BH4 also plays a role in protecting dopaminergic neurons by scavenging reactive oxygen species and supporting mitochondrial function, making it a potential therapeutic target for neurodegenerative diseases[2].

Sources
[1] Tetrahydrobioterin (BH4) Pathway: From Metabolism to ... - NCBI https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8573752/
[2] Crucial neuroprotective roles of the metabolite BH4 in dopaminergic ... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10197517/
[3] Tetrahydrobiopterin - Wikipedia https://en.wikipedia.org/wiki/Tetrahydrobiopterin
[4] What is Tetrahydrobiopterin (BH4) and How Can I Make More of it? https://www.mygenefood.com/blog/tetrahydrobiopterin-bh4-can-make/
[5] Administration of tetrahydrobiopterin restored the decline of ... https://www.sciencedirect.com/science/article/abs/pii/S0197018618305540

 

[DonPepe]

Lithium also is thought to increase BH4