Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

[dannybex]

I thought the same thing when reading this. It's very hard not to wonder why they gave 30 million to Arts and Sciences rather than to any ME/CFS research when the situation for many is so desperate yet totally neglected.

It's my understanding that their son became ill in 2013, the year after they made that donation in 2012.

 

[Chezboo]

It's my understanding that their son became ill in 2013, the year after they made that donation in 2012.

Gosh, that seems very cruel.

 

[Ben H]

Something i keep forgetting to ask, it seems when a new video or OMF announcement is made a new thread gets created for it, which is good, keeps threads from becoming ginormous, but can someone post in the old thread about the new one, so they are not overlooked?
I happened upon this thread by chance which is why i got the idea.

I think that @Ben Howell already did that. Right, Ben?

Yep-I did do this


B

 

[Alvin2]

Yep-I did do this


B

On this message forum, i don't recall seeing a link to this thread from the last one (i could be just too out of it though)

Edit: Nevermind i just checked and found it, my bad

 

[bertiedog]

I saw something (video/article?...sorry brain fog) with Dr. Jose Montoya recently and he talked about when people improve on antivirals how important it is to rest and then rest some more even after one starts to feel better. It's hard to delay gratification when you've been in bed and bored for a long time.

I would actually find that impossible but that probably is my Type A personality! However I am very lucky in that when I get over viruses and I have had so many this year already I bounce back but I am again taking a variety of herbs on a daily basis which seem to be helping.

The theory about "pushing through" when we were originally developing the illness definitely is true for me, I had so many viruses/infections between the years of 1996-2000 when I was teaching and my immune system wasn't functioning normally. It was also around that time that I developed autoimmune thyroid disease so I sort of fit this theory. Oh yes and I am a woman!

Pam

 

[clive powney]

thing I am struggling with at the moment is the mtor inhibitor question. There have been statements that some of the mtor inhibitors have made people feel good eg itraconozole anti fungal , and I for one feel slightly better when taking some of the things on this list - alcohol for example (only while I am "using" it). So will mtor promotors potentially work or not, or are some of us the opposites of each other and mtor needs down regulating?

 

[adreno]

Regarding mTOR: if some supplement or drug is helping you, and is a weak inhibitor of mTOR, it might not be worth stopping it. But taking powerful mTOR inhibitors or even five weak inhibitors simultaneously might be bad news. At least now I know why so many of the supps I've been trying make me feel rotten – many of them are mTOR inhibitors.

 

[Tuha]

Aren´t these mTOR discussions premature? If I understand correctly prof. Davis tested few patients (how many?) and he found a problem with mTOR enzyme in 2 patients. Is thins a significant number to be sure about?

 

[adreno]

Aren´t these mTOR discussions premature? If I understand correctly prof. Davis tested few patients (how many?) and he found a problem with mTOR enzyme in 2 patients. Is thins a significant number to be sure about?

If ME/CFS is a hypometabolic disorder – and increasing evidence suggests that it is – then further decreasing metabolism by inhibiting mTOR is likely a bad idea.

 

[PatJ]

This document looks like it's saying vitamin D is an mTOR inhibitor, which could explain why some of us (why only some?) can't tolerate it. I don't understand most of that document so maybe someone with more experience and less brain fog can look into it.

 

[Petko21]

@@Ben Howell You think that in the future will give test through the post mail? many of us come from countries where there is no accepted CFS as a physical illness, and I think it will no change in the future. It remains us nothing more than to turn to treatment abroad to other state.

 

[shannah]

This document looks like it's saying vitamin D is an mTOR inhibitor, which could explain why some of us (why only some?) can't tolerate it. I don't understand most of that document so maybe someone with more experience and less brain fog can look into it.

All of of this information about mTOR inhibitors is very valuable to know.

I use D, Curcumin and Reishi in my arsenal. The inflammation rages out of control without these.

I also use BCAA's. Will try increasing to see if I notice any difference.

 

[Jan]

There's no way anyone is gonna rest their way out of this.

I totally agree, I think improvements in symptoms are possible through rest, but certainly not a cure.

However, I would not be at all surprised to learn that pushing through the initial illness caused us not to recover and for ME to then develop. So many of us have seemingly been made permanently worse through pushing ourselves, or those helpful GET people telling us to ignore symptoms.

 

[Ben H]

@@Ben Howell You think that in the future will give test through the post mail? many of us come from countries where there is no accepted CFS as a physical illness, and I think it will no change in the future. It remains us nothing more than to turn to treatment abroad to other state.

One of the metabolomic tests that Laurel Crosby is working on at Stanford is able to be used by anyone worldwide, providing you can get a blood draw and centrifuged. This is still being tested before being made available.

The system here in the UK is abysmal and almost all of us are treated as if we have a psychological, psychosomatic illness so I can empathise.

So yes, we need a test, a biomarker for MECFS. The research from the US, Norway, Australia (Armstrong et al) is getting hard to be ignore and I believe that it will permeate to other countries. The issue is whether those countries choose to accept or continue the denial.


B

 

[BurnA]

One of the metabolomic tests that Laurel Crosby is working on at Stanford is able to be used by anyone worldwide

Ben, is this different to the impedance test and also to the 'iPhone' test?

 

[Ben H]

Ben, is this different to the impedance test and also to the 'iPhone' test?

Hey @BurnA

Yeah it's different. Its a metabolomic test measuring metabolites (similar to Naviaux).


B

 

[Aroa]

Hi there @Ben Howell !!!

Is it possible that as a result of the serum findings we could have a marker/s for the desease ?

 

[soulfeast]

I have never heard of mTOR before. Upon quick research; The main activator of mTOR is a variety of amino acids, especially leucine and the hormone insulin.

Natural Inhibitors of mTOR

• Protein restriction (R, R2): Leucine restriction (R), Glutamine restriction? (R), Methionine restriction? (R), Lysine restriction? (R), Arginine restriction? (R), Threonine restriction (R), Isoleucine restriction (R),
• Glutamine? (R),
• Calorie restriction (R),
• Ketogenic Diets (R)
• Intermittent Calorie Restriction (R),
• Exercise (R, R2) – Inhibited in liver and fat cells. Activated in brain, muscle and heart….All good…
• Cortisol/Glucocorticoids (R)
• Metformin (R), (by enhancing PRAS40’s association with RAPTOR)
• NAC (R) (Clinical Trial: “profoundly reduced mTOR activity” in T cells)
• Resveratrol
  
  (R)(C1/C2), unique– increased the association between mTOR and its inhibitor, DEPTOR. (R)
• Aspirin (R) – colorectal cancer cells,
• Cod liver/ Omega-3 (R) (C1/C2),
• Extra Virgin Olive Oil (R)
• EGCG/Tea (R, R2) (C1/?) – ATP-competitive inhibitor of both PI3K and mTOR (R)
• Curcumin (R, R2) (C1/C2) ….unique mechanism – separates raptor from mTOR (R)
• R-Lipoic Acid (R) – also decreased p70S6 kinase (R)
• Caffeine (R, R2, R3)(C1/?),
• Fisetin
  
  (R) – fat cells,
• Apigenin
  
  (R) (AMPK+, Akt-)
• Quercetin (R), ( PI3K/Akt-, AMPK+, Hamartin+)
• Genistein (R),
• DIM (R),
• Ursolic acid (R),
• Alcohol (R) (C1/C2),
• Emodin (found in Fo-Ti, Resveratrol, Rhubarb, Aloe,) (R) (C2),
• Andrographis/Andrographolide (R), (PI3K/Akt-)
• Pomegranate/Ellagic acid (R),
• Reishi (R)
• Milk thistle/Silymarin
  
  (R),
• Oleanolic acid (R)(C1),
• Anthocyanins/Grape Seed Extract (R),
• Astragalus (R), (colon cancer)
• Rhodiola
  
  (R)
• Carnosine (R)
• Plumbagin(black walnut hull) (R), Glucagon (R), AICAR (R)
• Pathways: IGF(-)…PI3K(-)…Akt(-)… AMPK(+)…

What about Orexin?

My daughter and I have narcolepsy. I found this:

Abstract
The lack of the neuropeptide orexin, also known as hypocretin, results in narcolepsy, a chronic sleep disorder characterized by frequent sleep/cataplexy attacks and rapid eye movement sleep abnormalities. However, the downstream pathways of orexin signaling are not clearly understood. Here, we show that orexin activates the mTOR pathway, a central regulator of cell growth and metabolism, in the mouse brain and multiple recombinant cell lines that express the G protein-coupled receptors (GPCRs), orexin 1 receptor (OX1R) or orexin 2 receptor (OX2R). This orexin/GPCR-stimulated mTOR activation is sensitive to rapamycin, an inhibitor of mTOR complex 1 (mTORC1) but is independent of two well known mTORC1 activators, Erk and Akt. Rather, our studies indicate that orexin activates mTORC1 via extracellular calcium influx and the lysosome pathway involving v-ATPase and Rag GTPases. Moreover, a cytoplasmic calcium transient is sufficient to mimic orexin/GPCR signaling to mTORC1 activation in a v-ATPase-dependent manner. Together, our studies suggest that the mTORC1 pathway functions downstream of orexin/GPCR signaling, which plays a crucial role in many physiological and metabolic processes.

https://www.ncbi.nlm.nih.gov/pubmed/25278019

 

[Louie]

If the Citric Acid Cycle is impaired or glycolysis is shut down, how does this explain PEM? There may be a ready explanation and I would be interested in hearing it. As PEM is unique to this disease any hypothesis of course must account for it so I am sure Ron Davis has an explanation as he has said this may well be the heart of the disease.

 

[Alvin2]

What about Orexin?

Orexin has many functions as mentioned, it controls many neurochemicals. Think of it as a conductor of an orchestra who likely also plays an instrument at the same time.
I'm guessing your both on what i call the 3 drug cocktail, sleeping pill/stimulant/anti depressant?

If the Citric Acid Cycle is impaired or glycolysis is shut down, how does this explain PEM? There may be a ready explanation and I would be interested in hearing it. As PEM is unique to this disease any hypothesis of course must account for it so I am sure Ron Davis has an explanation as he has said this may well be the heart of the disease.

thats similar to one of the questions i am writing right now to send him for the next video, though i was more asking why does exercise lead to permanent bad changes