it seems ron davis may have a new potential treatment

[raghav]

OMF says they are doing so much work to the point of exhaustion yet they reveal nothing. After the May 12th interview we have not been told much except for Whitney's experiment. What about all the collaborators across the globe ? If you say you dont have funds then wind up everything except the essential and focus on it.

 

[Sophiedw]

I think I recall Ron saying something in the past about CFS being a disease related to vitamin B12 and biotin. It's possible I've misremembered or somebody misquoted him, however there are a statistically significant amount of people who benefit from b12.

Does Ron know why some people benefit from b12 within the metabolic trap model?

It’s because they’re different illnesses! One that benefits from b12 and one that does not for me defines 2 subtypes

 

[Sophiedw]

Me being the latter. Freddd etc to me have something different, more inbuilt. Thus the immune issue that might be perpetuating long Covid related to a subtype of CFS. In some of us it’s genetic defect that makes our b12-glutathione and thereby krebs and urea cycle mess up. But in some people something weird and immune based is causing it.

 

[Sophiedw]

Thereby more curable

 

[Sophiedw]

I am only 29 though with all my knowledge garnered from these forums + research. So I likely know nothing at all.

These forums are a work of art though.

 

[Sophiedw]

@Janet Dafoe has Ron looked deeper into why Ativan / Lorazepam and Clonazepam helps ME/CFS Patients?
(It both partly binds at the TSPO receptor (peripheral benzodiazepine receptor (PBR)) which is unique to Lorazepam (Ativan), Clonazepam and Diazepam)
-> I know he did the Seehorse Instrument on Ativan and T-Cells.



Have you looked into testing pure TSPO ligands? FGIN-1-27 for example has shown to modulate T-Cells and ameliorates Autoimmunity.


Anxiolytic Drug FGIN-1-27 Ameliorates Autoimmunity by Metabolic Reprogramming of Pathogenic Th17 Cells
https://pubmed.ncbi.nlm.nih.gov/32111885/

Also due to dysfunctional krebs-urea which usually balances glutamate - hence the extreme seizure activity I’ve been having recently being balanced by the malic acid, as my krebs works a bit better

 

[Nuno]

It seems to me more probable that the key in fixing this is more through clearing the pathogen than to fix the metabolism pathways while the pathogen is still there.

Though I definitely think its possible to find a cure in a variety of ways, it may be much more complex to fix such a complexity of dysfunctional metabolism than, let's say, clear a persistent viral infection.

I hold this belief because honestly, Dr Chia achieved remission on CFS/ME patients, even if only for a couple months, while the treating with PegInterferons Alfa and Beta. So something must've been done right there, not to mention all biopsies and autopsies showing viral load in ME bodies.

But seriously, I just wished there would be more connections/discussions between all front line CFS/ME researchers, Dr Chia, Ron Davis and even Patterson, this way they could put pieces together and maybe achieve some consensus or progress faster.

Anyways, don't want to bring this off topic, I also hope this works out!

 

[Reading_Steiner]

why do some studies find viruses whereas the big high tech studies that were meant to be the be all and end all not 'find a pathogen' ? whatever happened to talk about the clonal expansion of T cells, wouldn't that indicate a pathogen if followed up ? what about the 'something in the blood' ? some many things that seem like they should lead somewhere but don't, its unnatural.

 

[raghav]

Mods can you make this thread sticky ?

 

[Badpack]

Mods can you make this thread sticky ?

Why tho ? There is no new potential ron davis treatment.

 

[bensmith]

Yeah, its dead?

 

[seamyb]

Possibly just caught a right hook, but maybe has a chance at an uppercut to win the fight? Very slow motion fight.

 

[Possibly James May]

Yeah, its dead?

End of October or sometime in November is when the next official update will be.

 

[bensmith]

@Possibly James May yeah but i thought we already knew the drug failed.

 

[RL_sparky]

Ron Davis will be giving a presentation at the NIH conference on September 27th titled:
"The Role of the Metabolic Trap in Fatigue"

https://web.cvent.com/event/4630788...sitePage:645d57e4-75eb-4769-b2c0-f201a0bfc6ce

 

[RL_sparky]

I guess we all will have to listen in. The good news is that besides Ron Davis there are other ME/CFS researchers speaking in the morning. We might get a better glimpse where the research stands.

 

[Alvin2]

Research is slow and they are starved of funds but they have raised over 28 million dollars since their inception, there must be something coming of it. We just don't know what.
That said we have no claim to demand anything anyways yet i want to know what the identity of the molecule causing the nanoneedle signal is.

I guess we all will have to listen in. The good news is that besides Ron Davis there are other ME/CFS researchers speaking in the morning. We might get a better glimpse where the research stands.

I imagine they have made progress, it will be interesting if there is anything game changing.

 

[Martin aka paused||M.E.]

anything game changing

I bet there isn't but hope never dies. It's quite an impressive lineup so it will be interesting to see what they say.

 

[Badpack]

Im over Cfs researchers tbh. Always sweet talks to get more funding and always meaningless results for years. They giving you the feel that something got done when nothing progressed at all. Only hope is long covid will get some traction and smarter minds and more money comes in. This is our hope from here.

 

[dylemmaz]

whitney had a bad reaction to the drug and in his own words said it’s looking like his bad reaction was caused by an interaction with another one of his medications. that doesn’t mean the drug failed or there is no promising potential treatment

but even if the experiment did fail, there’s a lot to be learned from failed experiments.