• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Questions for Ron Davis

Alvin2

The good news is patients don't die the bad news..
Messages
2,997
Ron: "We will do this when we can get a new electronics control box fabricated."
What is the estimated cost to do this?
Perhaps we can fundraise the amount.
It would be best to ask Dr. Moreau these specific questions.
The concept/treatment was in the OMF e-mails about his current work but didn't include contact information, are you able to provide it and will OMF permit him to discuss the details with an ME/CFS questioner or answer questions?

Thanks
 

Janet Dafoe

Board Member
Messages
867
What is the estimated cost to do this?
Perhaps we can fundraise the amount.

The concept/treatment was in the OMF e-mails about his current work but didn't include contact information, are you able to provide it and will OMF permit him to discuss the details with an ME/CFS questioner or answer questions?

Thanks
It is up to the researcher whether they talk about their work, not OMF.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,997
They’re trying to find parts. Ron doesn’t know. If they can’t find all the parts still have to figure it out from there. Maybe Ron can put some cost to it at that point.
Thats a headache, when you have parts you can't get its like spinning wheels.
Any chance they could be 3D printed or the electronics recreated by an electrical engineering grad student?
 

Martin aka paused||M.E.

Senior Member
Messages
2,291
@Janet Dafoe I don't want to bother whether Ron nor you but as this is my biggest issue atm please allow me to ask: does Ron has an idea, why Abilify stopped working? I think you read my post on CYP2D6 and co-medication on Facebook I received from a scientist from the University of Rostock (psychiatrist).
But I doubt his theory. I think it might have sth to do with desensitized receptors. If Ron finds the time it would be of much interest to me what he thinks.
 

Janet Dafoe

Board Member
Messages
867
@Janet Dafoe I don't want to bother whether Ron nor you but as this is my biggest issue atm please allow me to ask: does Ron has an idea, why Abilify stopped working? I think you read my post on CYP2D6 and co-medication on Facebook I received from a scientist from the University of Rostock (psychiatrist).
But I doubt his theory. I think it might have sth to do with desensitized receptors. If Ron finds the time it would be of much interest to me what he thinks.
They’ve been thinking about it but he doesn’t know.
 

seamyb

Senior Member
Messages
560
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?
 

nryanh94

Senior Member
Messages
165
They’re trying to find parts. Ron doesn’t know. If they can’t find all the parts still have to figure it out from there. Maybe Ron can put some cost to it at that point.
What would be the cost on a new robot (cringes in anticipation of response)
 

dylemmaz

Senior Member
Messages
136
hi @Janet Dafoe,

with whitney’s newest medication, is ron expecting results relatively quickly or will this be a medication that likely takes many months to take effect?

i suppose that could be a very difficult question to answer given it’s likely only newly being tried, so absolutely no worries if that’s something you can’t answer. that’s the last question i have for now!

also, please pass on a happy father’s day to ron from the rest of the me/cfs community. we are forever grateful for his work. thank you 😊
 

dylemmaz

Senior Member
Messages
136
There is a Woman communicating with Ron, she is using Deep Sea Saltwater treatments Detox prior to using Natural Dopamine supplements she runs a Facebook page called DETOXING for ME/CFS her name is Aristea Massaras so maybe Whitney did the Detox
i’d be very surprised if thats what it is. hes almost certainly just trying a new drug that helps with energy production of some sort