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it seems ron davis may have a new potential treatment

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raghav

Senior Member
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817
Location
India
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

Senior Member
Messages
384
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

Senior Member
Messages
384
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

Senior Member
Messages
384
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

Senior Member
Messages
384
@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

Senior Member
Messages
112
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

Senior Member
Messages
245
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.
 

RL_sparky

Senior Member
Messages
379
Location
California
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.
 
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Alvin2

The good news is patients don't die the bad news..
Messages
3,046
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.
 
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Badpack

Senior Member
Messages
382
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

Senior Member
Messages
136
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.
 
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