A Metabolic Trap for ME/CFS?

[JES]

@JES
Where did you hear the 44 min treatment? Was that in the lecture?

Yeah sorry for confusion, meant to say the treatment is discussed in the video at around 44 minutes. The treatment itself would take a couple of days if I understood it correctly, which is also huge if we compare it to taking lifelong, potentially expensive medication with side effects. But maybe I'm a bit too naively optimistic about this.

 

[frozenborderline]

Okay so I'm kind of confused about when Ron says the treatment will not be a drug, and will easily cure it in a matter of days.

Does he mean it won't be a new drug? Does he mean it will be supplements + some kind of nutraceutical? People have tried almost every cofactor or substrate in the kreb's cycle without dramatic effects but I do wonder if it has to be a certain high dose and/or the right combination of several nutrients, dosed in a very aggressive and focused way. For example, only extremely high dose thiamine hcl helped people in one fibro study, and nobody would've figured that out easily on their own most likely because the doses were so unprecedented.

Does he mean a hormone? Naviaux discusses dauer, which as a state is sort of controlled by steroid signalling iirc... the specific steroid hormones that bring worms out of this aren't ones we have i think? although NAD+ works too
but they might be analogous to steroid hormones we have, although I would think that there would be more reports of this working in humans.

It might have to be the right combination of nutrients and a hormone, and I guess this could count as "not a drug"

 

[Tally]

@debored13 There are a lot of treatments in medicine which are not drugs. Plasmapheresis, radiation treatment, dialysis, and probably many more I haven't heard of so I don't think "not a drug" is enough to guess what it is.

We probably shouldn't try to guess either, since Dr. Phair and Dr. Davis said it could be dangerous for us if they are wrong.

 

[raghav]

Lets see what Dr. Phair has to present at the symposium on the metabolic trap. They have been researching (tracer metabolites for example) for the past 4 months. So he should be able to say how longer it will take and in what direction to further test the hypothesis.

 

[frozenborderline]

@debored13 There are a lot of treatments in medicine which are not drugs. Plasmapheresis, radiation treatment, dialysis, and probably many more I haven't heard of so I don't think "not a drug" is enough to guess what it is.

We probably shouldn't try to guess either, since Dr. Phair and Dr. Davis said it could be dangerous for us if they are wrong.

I understand the concern, but in my case not treating will b very dangerous, so i have different attitude re: risk


To each their own.

 

[Seven7]

I have a question, does anybody knows if Ron D still feels antiviral is a bad idea? On clinical Nk cell dysfunction? I mean low number and activity. When I look for standard treatment, it is antiviral. So in the video does he meant antiviral on the sense ( even if you have high titters and a reactivaction w ME) or independent of the other clinical condition never do antivirals?
I struggle w low number and antivirals did help to lower my titters and made me feel better but not sure if good idea long term, but was confusing like never ever use them with ME, or if you have a shingle outbreak or height titters of ,X is ok on ME context.

 

[Belbyr]

Remember Nancy Klimas's group in Florida. Her latest video said she is ready to go with a human trial for CFS, just needs private donors because the NIH is hard to get funding from...

They have been researching this stuff for 3 decades now and I believe it could be her group that breaks the code like they did with gulf war syndrome. They used a combo of already existing drugs to get the job done.

 

[perrier]

There are so many logistical questions surrounding this, assuming the theory is correct.
Who will administer the treatments? What kind of doctors? Where? What preparation will the patient require before having the treatment? (The severely ill have been bed bound for years, and even decades. And they cannot just resume walking about normally.)How will severely reactive patients handle the treatments? The list of worries goes on. Of course, as a desperate mother, I want this available asap. The illness is breaking people: huge hungers have developed for those trapped in bed: affection, achievement, stimulus, food, sex, money, etc. Lord, I hope something gets solved soon....

 

[perrier]

Which is the recommended saliva test? Browsing through this thread, I noted Dr Davis had the Genos kit on his desk. This is 500$ US, and is described as the whole exome sequencing test. On the Dante website, they offer 3 tests. They offer the exome sequencing and the whole sequencing. The latter is 1000$ US.

Which is the recommended test for ME patients?

I would be very grateful for some help here in which one to purchase.

Also, please note, that on the Genos website it states that they require a physician requisition. I did not see such a request on the Dante website. However, I am not sure if it is requested, nevertheless..

Thanks for any help here in making a choice.

 

[Goldilocks]

Remember Nancy Klimas's group in Florida. Her latest video said she is ready to go with a human trial for CFS, just needs private donors because the NIH is hard to get funding from...

They have been researching this stuff for 3 decades now and I believe it could be her group that breaks the code like they did with gulf war syndrome. They used a combo of already existing drugs to get the job done.

Where can we sign up for the trial?

 

[maybe some day]

Remember Nancy Klimas's group in Florida. Her latest video said she is ready to go with a human trial for CFS, just needs private donors because the NIH is hard to get funding from...

They have been researching this stuff for 3 decades now and I believe it could be her group that breaks the code like they did with gulf war syndrome. They used a combo of already existing drugs to get the job done.

Gulf War syndrome is now treatable?

 

[Goldilocks]

Gulf War syndrome is now treatable?

I want to be a lab rat. Why not?

Gulf War syndrome is now treatable?

How exactly would someone get in touch with her to ask about maybe joining as a lab rat?

 

[Belbyr]

GWS is in human trials now after it was cured in mouse models. A combo (selected by super computing) of 3 old drugs is what did the trick. Results should be coming out by the end of the year...

There is no sign up for CFS trial. The same research group believes they have found the combo needed in CFS but don't have the money to conduct a proper trial. SolveCFS is their private funding group and advocacy.

 

[maybe some day]

GWS is in human trials now after it was cured in mouse models. A combo (selected by super computing) of 3 old drugs is what did the trick. Results should be coming out by the end of the year...

There is no sign up for CFS trial. The same research group believes they have found the combo needed in CFS but don't have the money to conduct a proper trial. SolveCFS is their private funding group and advocacy.

Ok yes I remember now her talk she gave on that. It would amazing if the human trials are a success and these vets can get their life back. CFS/ME cant be that far behind.

 

[perrier]

GWS is in human trials now after it was cured in mouse models. A combo (selected by super computing) of 3 old drugs is what did the trick. Results should be coming out by the end of the year...

There is no sign up for CFS trial. The same research group believes they have found the combo needed in CFS but don't have the money to conduct a proper trial. SolveCFS is their private funding group and advocacy.

Dear Belbyr
Would you be able to elaborate on the on your last paragraph regarding CFS. I'm really turning upside down that a group believes they have found the combo and that there is no-one in North America (the wealthiest area of the world) to do a trial, considering the hundreds of thousands of very sick people. Please post whatever news you have regarding this. And have they been in touch with Dr Davis.

 

[frozenborderline]

GWS is in human trials now after it was cured in mouse models. A combo (selected by super computing) of 3 old drugs is what did the trick. Results should be coming out by the end of the year...

There is no sign up for CFS trial. The same research group believes they have found the combo needed in CFS but don't have the money to conduct a proper trial. SolveCFS is their private funding group and advocacy.

where's the study on the mouse models? this could be relevant to cfs patients speculation

 

[JES]

I have read more than a couple of papers where something like "chronic fatigue" was cured in a mouse model. Unfortunately none of those discoveries on mice have been useful for solving human ME/CFS. Well, let's hope this one against all odds would be...

 

[MonkeyMan]

Dear Belbyr
Would you be able to elaborate on the on your last paragraph regarding CFS. I'm really turning upside down that a group believes they have found the combo and that there is no-one in North America (the wealthiest area of the world) to do a trial, considering the hundreds of thousands of very sick people. Please post whatever news you have regarding this. And have they been in touch with Dr Davis.

This may be of interest.

https://www.wndu.com/content/news/Gulf-War-illness-breakthrough-489040031.html

 

[wigglethemouse]

There is a recent thread for Nancy Klimas that might be of interest
https://forums.phoenixrising.me/index.php?threads/discovery-forum-2017-dr-nancy-klimas.61154/

This was the latest I've seen regarding her ME/CFS clinical trials
https://forums.phoenixrising.me/ind...2017-dr-nancy-klimas.61154/page-2#post-995403

 

[raghav]

I feel OMF should fund the clinical trials proposed by Nancy Klimas.