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An Update on ME/CFS Research with Ronald W. Davis, PhD

lauluce

as long as you manage to stay alive, there's hope
Messages
591
Location
argentina
does anybody know if and where can we get the huge graph with the metabolic pathways shown in the video? I think that wouldn't only help us understand the disease a little better, but I also would like my family to see it, to illustrate how even in one aspect (metabolic) the disease is extremely complex, yet is treated by the public as something trivial as a common cold. Thanks!
I cropped the blurry graphic from the video, this is the one I'm talking about:
A7M7YIt.png
 

hixxy

Senior Member
Messages
1,229
Location
Australia
I see Cort just gave another update. I see a lot of similarity between these researchers and Ron.
When they mention Oklahoma I have to believe that they are working with Dr Kem who cracked the code on POTS/dysautonomia a few years back.

https://www.healthrising.org/blog/2...ity-chronic-fatigue-syndrome-alan-light-talk/

From the article:

Being exposed to streptococcus bacteria could, therefore, have produced an immune response that mistakenly targeted the beta adrenergic receptors instead of streptococcus bacteria. Being exposed to other pathogens could result in the immune system attacking other aspects of the “fatigue response”.

Does anyone know if this could be a reason why some people feel temporarily better with antibiotics? Perhaps lowering levels of even "healthy" streptococcus (or other implicated bacteria) could also lower this erroneous immune response?

I personally had a 100% remission of all symptoms (even some pre ME/CFS symptoms including lifelong anxiety and ADHD) from antibiotics that was never able to be repeated. It only lasted 10 days though ... and was before things became severe.
 
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ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
The thing that is bugging me is that Dr Myhill found issues with the Krebs cycle and ATP/mito/energy production many years ago and even though some are helped by supplementing as she suggests many more are not helped even a little bit. Unless this is an acquired mitochondrial disease then the effects on the krebs cycle are surely downstream of the actual cause or main dysfunction? As many of us know, sometimes we hot on something that seems to wok, or unstick a problem, only to find it turns on us and bites us on the arse!

I saw Dr. Myhill in a video interview a year or so ago. She said that although she believed that mitochondrial dysfunction was the ultimate cause of CFS, she would spend 50-60% of her time with patients treating the gut.
 
does anybody know if and where can we get the huge graph with the metabolic pathways shown in the video? I think that wouldn't only help us understand the disease a little better, but I also would like my family to see it, to illustrate how even in one aspect (metabolic) the disease is extremely complex, yet is treated by the public as something trivial as a common cold. Thanks!
I cropped the blurry graphic from the video, this is the one I'm talking about:
A7M7YIt.png
Googling "metabolic pathways poster" and clicking through to a few links got me to http://www.cc.gatech.edu/~turk/bio_sim/articles/metabolic_pathways.png - it's not the exact same picture but if you just want to demonstrate the complexity then I think it should do.
 

hixxy

Senior Member
Messages
1,229
Location
Australia
I saw Dr. Myhill in a video interview a year or so ago. She said that although she believed that mitochondrial dysfunction was the ultimate cause of CFS, she would spend 50-60% of her time with patients treating the gut.

How can it be the ultimate cause? It doesn't just happen spontaneously. Something has to cause the mitochondrial dysfunction.
 
Messages
43
I saw Dr. Myhill in a video interview a year or so ago. She said that although she believed that mitochondrial dysfunction was the ultimate cause of CFS, she would spend 50-60% of her time with patients treating the gut.

I'm just taking one month of rest from working.
Since November I've been having continuos orine infections, B12 down, T4 below parameters, and PCR +.
( I'm surprised I'd got that energy to continue teaching next 4 months!)
I'm expecting my blood tests in a week.
Its really funny my doctor!
He prescribes almost everything in my bood tests !! :D
Poor! He's really lost!
I've been reading about different investigations and I decided to use also lactobacilus to reinforce inmune sistem.
 
Messages
2,391
Location
UK
How can it be the ultimate cause? It doesn't just happen spontaneously. Something has to cause the mitochondrial dysfunction.
I suspect this may be a slight linguistic issue. Maybe "ultimate cause" is not quite what is meant, and instead perhaps means more like fundamental issue, rather than originating trigger.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
How can it be the ultimate cause? It doesn't just happen spontaneously. Something has to cause the mitochondrial dysfunction.

Sorry about that, I meant the ultimate cause of symptoms,fatigue, PEM etc. I don't remember her talking about what causes the mito dysfunction in detail. I think she talked about poor diet, environmental toxins etc.

I just found it really interesting that she spends 50-60% of her time with patients treating the gut. I am having great success treating my gut! The most success I've had in 10 years of different protocols.
 

Janet Dafoe

Board Member
Messages
867
one things for sure, it's not all in our heads:D
I wish I could "like" this 100x!
Whitney is in hospital now (see Whitney Updates" thread) getting j tube replaced. I've been educating all the nurses and docs I can corner. They are really interested. I told them about the metabolites and NK cell stuff and the new research. They really took it in and exclaimed that they'd never learned about it in nursing/med school. Good opportunity. This hospital unit is great. El Camino Hispital, Unit 2B, "Short Stay".
 
Messages
78
Location
Melbourne, Australia
Yes. They will publish it as soon as they can. They are working on it, as well as putting together an NIH grant application for the new RFA. So much to do. You saw his face. He's tired and doing all he can.

Yes, we did notice how tired he looked. Though I've got no spare spoons, I'd love to send him some. His efforts are truly heroic, and I'm sure the deep love for his son drives him on. So much to do, and we are so very grateful for his tireless efforts.
 

ash0787

Senior Member
Messages
308
The stomach problems while often a demanding problem seem to me to be a consequence of a malfunctioning body rather than the origin, the reason I say that is because I never notice anything different about the stomach until after a major crash, whereas I constantly feel small changes to the rest of the body in response to even minor activities, the one that I attribute to the activation of the primary disease mechanism is a sort of subtle tingling feeling, its either immune activity or some sort of calcium imbalance or something.
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
from my experience with this disease there is a huge stress/cortisol/adrenaline involvement.

how many times people wake early feel better next day.....no sleep and feel better etc...missing cortisol rise in early AM......there are many threads on it.
I often wondered is our body turning against cortisol.,,,,see it as catabolic to cells and generating antibodies in serum.
I don't even know if such a phenomonon can exist,,,,cortisol/adrenaline/stress/epinephine antibody.
A very high % of patients with CFS/ME had high stress periods pre-illness. CFS/ME same family of symtoms as PTSD/Gulf War, etc. Common theme.....stressed to the max.
Long shot, but I hope its ruled out at some point.
Best wishes to Whitney and all the researchers on the project.
 

Belbyr

Senior Member
Messages
602
Location
Memphis
The dysautonomia/POTS/syncope patient groups and researchers have known about autoantibody involvement since around 2014 when Dr Kem from Oklahoma found extra autoantibodies in his MG patients and published about it. He reached out to the Vanderbilt autonomic research facility, did a small blinded study and proved his findings with 100% accuracy in their patients.

These antibodies modulate the way the adrenal receptors function. This is why we are having what seems like 'stress' and 'anxiety' symptoms.

Dr Kem presented at 2016 Dysautonomia conference. It was a really interesting presentation. He was able to induce autonomic symptoms in rabbit models, so he is on to something too.
 

Wolfiness

Activity Level 0
Messages
482
Location
UK
So is it possible the neural retrainers are still right and there's some signalling molecule from the brain lurking in the serum erroneously saying "Woah, stop with the glycolysis, there's no sugar left!" ? (I bloody well hope not, the neural retrainers are Bruce Lipton-espousing irritants.)
 

hixxy

Senior Member
Messages
1,229
Location
Australia
So is it possible the neural retrainers are still right and there's some signalling molecule from the brain lurking in the serum erroneously saying "Woah, stop with the glycolysis, there's no sugar left!" ? (I bloody well hope not, the neural retrainers are Bruce Lipton-espousing irritants.)

No.