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it seems ron davis may have a new potential treatment

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dylemmaz

Senior Member
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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.
these things do take a lot of time. janet recently said that it’s such a difficult process because ron has to create entirely new technologies in order to go about his experiments in this field. but even she is telling him all the time to speed it up!

right now it seems ron has put the nano needle on hold while he uses funding for other things.

personally i think the metabolic trap developments have been impressive and encouraging. in his most recent update ron said it’s currently stalled because his robots that he will be using to test the fda approved drugs on the yeast are broken, and he is working on getting them repaired. but aside from that the testing on yeast should go by swiftly and we may find a drug by the end of the year that fixes the trap in yeast.

there are great things happening because of abilify. ron said in his last youtube update that he is doing a meta analysis on drugs similar to abilify that may have a better effect on dopamine. so i wouldn’t say he isn’t looking in to other antipsychotics because he most likely is!
 

dylemmaz

Senior Member
Messages
136
Oof good point.
i think we definitely have good things coming! it seems ron’s diversity in approach to cfs, while slow in drawing conclusions, has allowed multiple routes towards potential healing and treatment. he has so many projects going at once. thats both a positive and a negative thing. if the metabolic trap theory is wrong, we have dopamine drugs that will be found in the meta analysis. if there are no drugs that work in a similar way to abilify, we have the parasite route that ron is making dna probes for. if no parasites are found, we have other drugs that he is trying to alter like copaxone which may help. if copaxone doesn’t help we can try suramin which ron has been trying to find a distributor for since before 2018 (and may now have one). while the multipronged approach is good in that you don’t have all your eggs in one basket, it is slow. so that’s a downside. seems that many conclusions are on the horizon though, and i am personally very hopeful because of his research!!
 
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Martin aka paused||M.E.

Senior Member
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2,291
As a supporter of OMF I have to comment this: they don’t only look into a metabolic trap! But it is the most promising piece of research we have so far because it works in human cells and the snails. And if you pump out the tryptophan they are normal again. Science is about trial and error. Things that look good on a paper doesn't necessarily lead to in vitro or in vivo results. And it's not only because it's helping Whitney. Abilify helps many. Bonilla has made a bad study so this is the first study for a real treatment clinicians can use.
It's no cure but what do you guys expect??? Be happy that we have come so far to have a bandaid! I can't read those comments anymore, really!!!
 
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Martin aka paused||M.E.

Senior Member
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2,291
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 ?
Then go and find sth better!
 
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i think we definitely have good things coming! it seems ron’s diversity in approach to cfs, while slow in drawing conclusions, has allowed multiple routes towards potential healing and treatment. he has so many projects going at once. thats both a positive and a negative thing. if the metabolic trap theory is wrong, we have dopamine drugs that will be found in the meta analysis. if there are no drugs that work in a similar way to abilify, we have the parasite route that ron is making dna probes for. if no parasites are found, we have other drugs that he is trying to alter like copaxone which may help. if copaxone doesn’t help we can try suramin which ron has been trying to find a distributor for since before 2018 (and may now have one). while the multipronged approach is good in that you don’t have all your eggs in one basket, it is slow. so that’s a downside. seems that many conclusions are on the horizon though, and i am personally very hopeful because of his research!!

if anyone can get in contact with Ron and tell him I got my suramin from medkoo.com, your more than welcome to.
 
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Then go and find sth better!

I found some things that worked for a while for me @Martin aka paused||M.E. for a while and happened to find another person who posted about his experience with the things that worked for a while for me, we are in regular contact and look over various biochemical pathways and research papers, we even have healthy disagreements. I still think Ron is ignoring the environmental aspects of this illness at this point and that is why I am finding something better. I will let people know my experience with suramin when I test that on myself.
 

dylemmaz

Senior Member
Messages
136
if anyone can get in contact with Ron and tell him I got my suramin from medkoo.com, your more than welcome to.
when are you trialing the suramin? are you taking the dose used in the naviaux trial of autistic patients? 1/5th that used for sleeping sickness
 

Martin aka paused||M.E.

Senior Member
Messages
2,291
I found some things that worked for a while for me @Martin aka paused||M.E. for a while and happened to find another person who posted about his experience with the things that worked for a while for me, we are in regular contact and look over various biochemical pathways and research papers, we even have healthy disagreements. I still think Ron is ignoring the environmental aspects of this illness at this point and that is why I am finding something better. I will let people know my experience with suramin when I test that on myself.
That’s good! If you find a treatment it serves everyone
 

bensmith

Senior Member
Messages
1,547
I hope they announce what the treatment is this month. I could really use some good news after dropping from mod to severe/very.

Max we have a discord where people trial all Kinds of drugs. search it out maybe, sounds like you are a good person for the group.
 
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lenora

Senior Member
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4,913
OK.....everyone has their own opinion about which way research should go. Quite honestly, I'm tired of the way Ron Davis is constantly targeted because of his lack of beliefs in a.) b.) c.), etc.

We're ALL different and that has to be understood and respected. Besides, exactly where are the funds for this research to come from? Surely there have to be other researchers....find them and find out what they're doing and how much is feasabile.

I've had this for as many years as anyone on this Forum. I can assure that multiple "for certain" explanations have come and long gone during this time. Progress is being made, but it's never going to be overnight, please think about that and accept it.

If you want to try far-out there cures, do so....but understand that confirmation will never follow a particular course of action. Science is used because it would be careless of any researcher to recommend something that would harm large amounts of people.

I fully understand those in the drawn-out suffering stages of CFS/ME trying these cures, but not the rest of you. Protect what you have, please don't get caught up in the hype of so many of these situations. Some of this is truly dangerous. And it concerns me to see so many of you endanger what may be your big chance. Just guard your own health.

I'm not blaming people for getting frustrated with the illness, I have also and like someone recently posted, the older you get, the more complications there are. Personally, at 74 I no longer have hopes for myself....but I do for you. Yours, Lenora.
 

frozenborderline

Senior Member
Messages
4,405
Could be something like Prednisone, Cyclophosphamide, or something that affects that large protein that causes the signal in the nanoneedle.
Who knows, maybe they got their hands on some Suramin.
I doubt they'd use a simple corticosteroid. Broad immune suppression has surely been experimented with enough in this illness to know it's not a cure, plus it risks infection worsening if there are any occult infections.

Cyclophosphamide__fairly risky and also seems like it's being Trialled without success by Norwegian researchers.

Suramin is more of a possibility but given it's toxicity I sincerely doubt they'd use it on Whitney first.
Plus there are purinergic antagonists besides suramin that are viable enough to not need to resort to suramin. Like lidocaine.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,997
I doubt they'd use a simple corticosteroid. Broad immune suppression has surely been experimented with enough in this illness to know it's not a cure, plus it risks infection worsening if there are any occult infections.

Cyclophosphamide__fairly risky and also seems like it's being Trialled without success by Norwegian researchers.

Suramin is more of a possibility but given it's toxicity I sincerely doubt they'd use it on Whitney first.
Plus there are purinergic antagonists besides suramin that are viable enough to not need to resort to suramin. Like lidocaine.
Yet we have anecdotal reports about things like Prednisone and others.
That said anecdotal without understanding mechanism is poor science and needs replication and investigation.

All that said i want to know more about what they are doing and why they are not chasing certain avenues (the nanoneedle is a big one) but not having the answers does not turn me against OMF.
 

dylemmaz

Senior Member
Messages
136
Suramin is more of a possibility but given it's toxicity I sincerely doubt they'd use it on Whitney first.
Plus there are purinergic antagonists besides suramin that are viable enough to not need to resort to suramin. Like lidocaine.
in a lecture from 2018 ron said suramin was relatively safe and non toxic. maybe he was referring to lower doses than the ones typically used in sleeping sickness?
 

frozenborderline

Senior Member
Messages
4,405
Yet we have anecdotal reports about things like Prednisone and others.
@Hip has included prednisone in his PEM busters . I have heard some who have used it to help with extreme mcas flares

Rarely have I heard a beneficial story about its use for more than a week without side effects or withdrawal though.

And as @Hip discussed , chias research suggests that a corticosteroid combined with An acute viral infection could lead to me/cfs . its one of the iterations of the broader pattern that @Hip calls the "dual factor theory"
All that said i want to know more about what they are doing and why they are not chasing certain avenues (the nanoneedle is a big one) but not having the answers does not turn me against OMF.
I don't think anyone in this convo is anti OMF. I certainly have admired many of their projects. I also think there are some other projects I would rather them focus on. Regardless, this is not some schmittian friend/enemy distinction . just all about what we ask of institutions that claim to be fighting for us. Even if we are not financial stakeholders , we are stakeholders in a different way , I believe.
 

frozenborderline

Senior Member
Messages
4,405
in a lecture from 2018 ron said suramin was relatively safe and non toxic. maybe he was referring to lower doses than the ones typically used in sleeping sickness?
It must be that. By the standards of other drugs used in sleeping sickness maybe its relatively benign, As those drugs ARe very intense. but its quite a nasty drug and I would imagine that they must be using lower doses ..

However lidocaine is used intravenously /systemically in me/cfs and pain problems in general , and it is incidentally a purinergic receptor antagonist , just like suramin
 
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246
I hope they announce what the treatment is this month. I could really use some good news after dropping from mod to severe/very.

Max we have a discord where people trial all Kinds of drugs. search it out maybe, sounds like you are a good person for the group.

what is the group?
 
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