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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.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.
"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.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.
Why? We don't know anything. Whitney messaged me two months ago saying his dad is near to treatments.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.
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.
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.
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.
I don’t know how you extrapolate this from Whitney going on a diet which looks like an attempt to reset his metabolism.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 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 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.
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.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.
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?It is very telling that Whitney is doing the Bornfree protocol, that bodes poorly for his confidence in research.
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.
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A summary of the talk with points copied from people on twiter (mix of people)
in this thread dopamine is being discussed: https://forums.phoenixrising.me/threads/pramipexole-put-my-cfs-me-into-remission.92410/*increasing dopamine can help somewhat (Abilify can work but this also makes me think what else could work?)
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.@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)