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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Dear Max, would you be able to please elaborate. Suranim is not readily available. I spoke to a doctor recently who indicated this to me. What 10 treatments did you have? What were they? Please help us out. We are all here very desperate. Thank youI have had at least 10 treatments that worked really well for 2 weeks and yet I am unable to get in contact with Ron, ugh!
I do not know if this is possible or even recommended, however, if you go on Whitney's Facebook page, you may be able to write him a message. Just a thought, particularly if you feel the results were impressive.I have been trying to get in contact with @Janet Dafoe, Ashley, Ron and Whitney for months to tell them about the successes I have had, the data I collected such as my MRI, lab tests, etc, ask to look at the research data they collected, etc, but have been unable to do so, @dylemmaz I am glad you were able to make contact with @Whit
Max, thanks for the list. But you are saying they worked for 2 to 3 weeks, after which I guess they ceased working???@dylemmaz @perrier I got my suramin from: https://medkoo.com/products/8607, pretty expensive
The approximately 10 treatments that kinda worked for me for at most 2-3 weeks were:
oral nystatin swish and swallow
oral amphotericin b
diatomaceous earth powder mixed with water and drunk
undecalyenic acid and clean MCT oil
I think there were a few more, it'd take me a while to extract that information from my notes.
Max, thanks for the list. But you are saying they worked for 2 to 3 weeks, after which I guess they ceased working???
I refuse to use facebook haha and I'd rather spend my time on other things besides facebook.
max facebooking whitney mighr be best, i have talked to him there some. Not sure though. I dont think they will respond though tbh. Im sure they are kind of maxed out.
twitter is your best bet for reaching janet. post something and tag her @. she usually responds to those i believe. or reply to one of her posts. i’d go with the former thoughI refuse to use facebook haha and I'd rather spend my time on other things besides facebook.
twitter is your best bet for reaching janet. post something and tag her @. she usually responds to those i believe. or reply to one of her posts. i’d go with the former though
Ok I will add to that - they seem to be going after the Metabolic Trap, they said the yeast do not grow ( become in a sort of cryogenic suspended state ? ) how do we know that in a human that wouldn't simply cause instant death ? maybe human has some way around that, a backup mechanism they don't know about. Also even if it does just make you tired, a human is not a yeast sat on a dish that can't change its environment, humans can change so many variables that might break the metabolic trap e.g. eating various things, exercise, temperature changes, infections, various drugs, rest, etc. If the metabolic trap provides a stable state where almost no energy is created, why do me/cfs patients experience a lot of change in their activity capabilities over time ?First they announced with much pomp that they have found a big molecule blocking the mitochondria and that was the real deal. Nothing came out of it.
Second they talked about the nano needle and said this will solve the problem of ME in a jiffy and nothing came out of it.
Third they started talking about the metabolic trap and nothing came out of it.
Now abilify and nothing will come out of it. Why is that just because abilify works in Whitney it deserves a clinical trial and not the other anti psychotics which have worked for different patients like ziprasidone in my case, amisulpiride in @Hip I think and others which people have tried.
Maybe it is all part of the fund raising gimmick. They have listed 20 projects in the list of to do projects and none completed except for the preload failure (Thanks to David Systrom).
I am just fedup with all this and we dont have a good competing research organization to turn to. Polybio ? well maybe.
Added later: Ron Davis says they have generated so much data they dont have time to analyze it. I am stumped by that statement.