it seems ron davis may have a new potential treatment

[dylemmaz]

Hi @dylemmaz,,,,,,You may already be aware of this, but Whitney was only given very tiny doses of an abilify pill, never the full amount...at least as far as I know. Yours, Lenora.

hi Lenora! yes, janet has said whitney is on 2mg of abilify! i’m on .5mg myself!

 

[Janet Dafoe]

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

I’m sorry I lost track of your email. When I saw this post I went back and found it and I have now replied. I am so sorry to anyone who has trouble getting a hold of me. I try to respond as much as possible. But I get so busy taking care of Whitney and responding to people I hardly have any time left over and it’s hard to respond to everybody because I get so many messages. I would love to respond to everybody! So many lovely people trying to help and it’s really appreciated. Thank you

 

[dylemmaz]

I would love to respond to everybody! So many lovely people trying to help and it’s really appreciated. Thank you

hi janet!! thank you so much for responding to the thread. i am very hopeful with ron’s new projects and i am crossing my fingers that the newest experiment will lead whitney to better health, and then onward to the rest of us!!!

may i ask, do you think there will be another update video of ron’s in the near future? i know the community is eager for one but we also understand that research should be his main priority, not filming youtube videos to keep us in the loop thank you again

 

[Janet Dafoe]

Dont goof up like not knowing the accuracy of the mass spectrometer at Stanford over which you wasted almost 6-8 months and then said "Hey this specgtrometer is not accurate enough to measure kynurenine. I am still upset how a world renowned scientist like Ron Davis did not look at the nameplate of the spectrometer where its resolution or accuracy or error percentage will be given. Even a 100 dollar mitutoyo vernier caliper mentions the least count (accuracy) to which it is reliable. So please get your act together and think like engineers and not scientists when it comes to measurements.

This is so much more complicated than what you imply here. For one thing, when you don’t know the level of something you have to measure it to find out. It turned out that the levels were too low to be picked up by the mass Spectrometer. There are other complications as well. An expert in mass spectrometry was used in these experiments. To imply that Ron didn’t read the label on the machine it’s just plain ridiculous.

 

[seamyb]

This is so much more complicated than what you imply here. For one thing, when you don’t know the level of something you have to measure it to find out. It turned out that the levels were too low to be picked up by the mass Spectrometer. There are other complications as well. An expert in mass spectrometry was used in these experiments. To imply that Ron didn’t read the label on the machine it’s just plain ridiculous.

Janet, only been sick a year and I'm already a huge fan of you and your family. I know it's for terrible reasons, but so many people around the world are inspired by you. Props from Ireland.

 

[max_yazhbin]

Hello @max_yazhbin......No, I'm not after an argument especially on a public forum but I do believe that there is the word gratitude that should be used more often than it is.

You may be younger and better educated than I was (although I was an RN at a time when you really worked for it), but I chose not to stay in that field b/c of the long hrs. (which I thought caused my sleep problems! Not so, as it turned out). So my point is this: You're of a newer, younger generation and it's not just up to the researchers to get involved, but also you, yourself. Put forth an agenda, use it....try to make some sense of what we're facing. I would like you to understand that all those years ago we were faced with nothing....no help of any sort, including an understanding by us, our families (and my mother, etc., never knew how ill I was), so we had to start from nothing. All things considered, we didn't do too bad, and I'm proud of that.

I've been involved from the beginning with many groups, including the Syringomyelia group (which is an illness I have....it's under the name of ASAP), had surgery for it and then Arnold-Chiari Malformation. Understand that we had to find doctors, there were no lists of any sorts, things came by newsletter (when someone was well enough to do one) and by phone. Surgery for some of it was experimental and I had it, so I understand that side of life. It was a choice I had to make and I did.

Little by little phone calls included other countries & we even tried to help people in them. We did what we could for the time and place. And yes, researchers played a role in that and we were grateful that they took an interest in us b/c no one else would...and that's the gospel. Understand also that there were many kind doctors who tried to help, but just didn't have the knowledge. And yes, I'm also a victim of CFS/ME/FM....just as all of you are. My life as I knew it was taken away, my family's and without changing myself, I couldn't help change anything else. My thoughts only.

We're all different personalities....that's being human. But for heaven's sake, pass on a compliment when one is due and yes, people do deserve that. If nothing else, be grateful for the bed you're able to go to each night, the food you eat, and a roof of some sort over your head. Don't blame researchers for failing to find a cure for a complex problem.

You're quite correct in stating that I don't know the inside world of research work, everything is made up of a hierarchy of rules and superiority....especially government entities. I still say this is more money than we've seen before....can't we just be thankful for that?

As far as Ron Davis goes, may I point out that the man is long past retirement, he's now 80, but his knowledge is superior. He doesn't do this for the money, but out of love. I don't know this family personally, I have nothing to gain by standing up for him, but they're all dealing with an extremely difficult situation. I know how I feel at my age, my husband's not what he was at 77, but his mind is constantly working and he is always involved in volunteer work (and no, we're not religious....it's just something you do).

I also know there are plenty of other researchers at different universities and as far as what you do with your body, it's your business. If you feel that you know what you're doing, fine...run with it, I'm not stopping you. However I am concerned about people who aren't as knowledgeable about this entire business of trying this, that or the other....we're not talking small doses of something and I'm simply asking that they think about what they're doing. I know that for me it has taken all these years to learn about vitamins, supplements and herbs....studying, not just reading what someone says. I happen to like learning, so that's fine, but as you know...and will know even more as you get older, things are constantly changing. Enzymes are being discovered at a fast rate, there are so many unknowns.

I'm from the world of yesterday and readily admit to that. I'm not even familiar with some of the research being done today and no, my brain won't let me learn. But you are, and you should take your rightful place, be proud of what you know and use it for the good of the many people who need it. Sometimes things are simply dropped in our laps, responsibilities that we may not have looked for, but they can also be gifts. So we each had/have a role to play and no, it isn't just the researchers who "have" to find a cure for this illness. People need so much help along the way....especially hope.

I'm not against trying....indeed, that has been our role in life, hasn't it? You sound quite ill and I truly wish that you'll find something else that will help put you on the path of recovery. Believe it or not, Max, I do wish people well....everyone. It's bad enough that we suffer, let alone making life more difficult for each other.

No, I'm not upset with anything you wrote....I'm sure there is plenty of truth in it, also. But it's not now nor ever will be a perfect world, populated by perfect people and perfect answers. We're just grateful for improvements, and increments....whatever they may be. Anyone is welcome to disagree with me....I would expect nothing less. No, I don't now or have never spoken for everyone. Be well. Yours, Lenora.

I was also a volunteer in an ER for 11 years and I have a low and correct opinion on medicine, especially doctors. It was only in the last year that I started to look into ME/CFS rather than the MCS that I have been focusing on in the past 3 years and the decade before that whereby I didn't even have a name for my condition but was getting worse. Reaching out and building a community is very useful but gratitude isn't a strategy.

I am in agreement Ron is one of the best to approach this field, however, I think he is ignoring the functional medicine approach whereby they have been experimenting with and have lots of data on these ME/CFS patients and yet there is no mention of a collaboration with such people. Think about it, 60 years of metabolomics, metallomics, etc data and actual experiments and yet the focus is on the MD's and PhDs?

There is no such thing as perfect, but there is better and that's a good place to start.

 

[max_yazhbin]

I’m sorry I lost track of your email. When I saw this post I went back and found it and I have now replied. I am so sorry to anyone who has trouble getting a hold of me. I try to respond as much as possible. But I get so busy taking care of Whitney and responding to people I hardly have any time left over and it’s hard to respond to everybody because I get so many messages. I would love to respond to everybody! So many lovely people trying to help and it’s really appreciated. Thank you

No problem, I am glad we got in contact.

 

[bensmith]

+1 on dr markov.

and thanks.

 

[Aidan Walsh]

i was able to get whitney to respond to me in one of his most recent instagram posts. he said that he has been feeling worse recently, the worst he has in a year. reason being because of a test that ron had him do for a new medication. i had asked him if the test he was doing would lead to a potential treatment for the community, or if we could have this test performed ourselves. this is what he responded with:

“it’s a test for a possible drug that Ron Davis is working on. I am the volunteer guinea pig. If the drug helps you will all be able to take the test and the drug very soon. “

my suspicions are copaxone. ron has said recently he has been trying to alter the drug to avoid allergic reactions developing over time. if you aren’t aware copaxone was able to make sick cells react in the same way that healthy cells do. according to the nanoneedle device the cfs cells couldn’t be differentiated between healthy control cells after treatment with the drug (my layman’s understanding). this is just my suspicion and i could be completely wrong.

the only thing is, i cant wrap my head around what test whitney would have had to do in order to test for this medication. or what tests one would even have to do to ”test for a medication?” what does that mean???? the testing must have required something to do with exertion, because whitney said after the testing he felt the worst he has in a year? i suppose it could have been some sort of metabolic exercise testing?

what drug do you think ron may be working on?

It likely is the low dose Naltrexone he mentioned in his recent I think the last video he wants to get it through the FDA. Whitney knows the medicine he is on stops working in most at about 6+ months.

If it is Naltrexone what test would they likely run for it?

 

[Aidan Walsh]

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

I always send things to @Janet Dafoe on Twitter she responds with a like knowing she has this

 

[Aidan Walsh]

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 ?

Yes, he mentions thearing t

No it was surely a drug test. On twitter you could read that he said “treatments are in sight”

They were some time back doing tests in one of the Cars outside of Ron's place they needed a fresh sample from Whitney. Not sure if it was blood, urine, hair, or a biopsy, they brought the lab to the house, one of them was the Australian researcher on his Team.

I just finished doing private tests one for Genetic HLAB27 autoimmune, the other one was for Genetic CPT2 or CPTII a blood measurement of 'Creatine Kinase' levels so need to wait 3 days on one & 13 days for results to be emailed to me.

 

[Rufous McKinney]

If it is Naltrexone what test would they likely run for it?

seems doubtful to me that its low dose LDN - its helped me but thats not a pill that cures this. Its a symptom intensity reducer.

 

[Aidan Walsh]

come on Ron Davis ! We have had enough of the suspense. Out with it please.

I thought it was called the 'Open' Medicine Foundation?

 

[Aidan Walsh]

seems doubtful to me that its low dose LDN - its helped me but thats not a pill that cures this. Its a symptom intensity reducer.

Ron Davis did say he wants FDA approval. What happened to the East African Sleeping Sickness? In the Jungle of Africa, they use a paper blot to diagnose it there but he did say the East type is very hard to pick up a positive like the West type

 

[Aidan Walsh]

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 think his sister reads his messages

 

[bensmith]

Surely he has been on ldn before now?

 

[Janet Dafoe]

I think his sister reads his messages

At this point Whitney reads his own messages.

 

[Perfson]

I know about metabolic trap theory on very basic level, so excuse me if i ask silly questions. And i also understand that Ron doesn't want us to try things yet, but im gonna ask about natural approach, while not expecting an answer.
Shouldn't we simply get better, and get our energy production increased if we eat food with Kynurenic Acid? I heard that some spices like basil and thyme have some of that acid.
Also, apparently there are tryptophan-free diets. Should it work for us as well?

 

[Aidan Walsh]

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?

When you look into B12 or biotin it is best to do Private testing because most Doctors will only run the average B12 test you need to know if you have Pernicious Anemia B12 issues if your gut is absorbing or not, best is 4 months off (all vitamins minerals) cereals a week before then run the tests. If you have the PA then oral B12

will not work you need regular injections...There is a good Group on Facebook look into the files there it is called B12 Wake Up. If you need injections it is best to control your own injections most Doctors will not give you enough...If not PA then load up on good B12 doses you need other things as well so read all the files as well

 

[Martin aka paused||M.E.]

When you look into B12 or biotin it is best to do Private testing because most Doctors will only run the average B12 test you need to know if you have Pernicious Anemia B12 issues if your gut is absorbing or not, best is 4 months off (all vitamins minerals) cereals a week before then run the tests. If you have the PA then oral B12

will not work you need regular injections...There is a good Group on Facebook look into the files there it is called B12 Wake Up. If you need injections it is best to control your own injections most Doctors will not give you enough...If not PA then load up on good B12 doses you need other things as well so read all the files as well

Save the money. It's easier just to take it and see if you benefit. I don't.