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

Ben H

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




Today we are pleased to present our Scientific Advisory Board Director and Director of the Stanford Genome Technology Center, Ronald W. Davis, PhD, answering patient questions about his recent 2/21/17 Research Update Video. We thank you for all your great questions. We have chosen several of them for Dr. Davis to answer in this video, produced by Ashley (Davis) Haugen.



OMF is the primary fundraising organization supporting the work of Dr. Davis' CFS Research Center team at the SGTC. As you have seen in the update video, Dr. Davis’ team has made exciting breakthroughs in understanding the molecular basis of this devastating disease. The team is now poised to unravel the complexity of CFS and start identifying potential treatments. Significant funding is needed for this to happen and your donations at every amount are critical in our mission to find treatments and a cure as fast as possible.

Please donate today and invite your family and friends to join you.


Thanks guys,

EDIT: Transcript link here:

https://www.dropbox.com/s/fh8c5bgez...vis - transcript of video Q&A - v0.2.pdf?dl=0

Thanks @sue la-la !


B
 
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duncan

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I cannot help but like this man.

His responses are so informed and valuable, but also a bit troubling for those of us with both diagnoses of ME/CFS and persistent bacterial infections - the latter of which seem to warrant abx. But if abx may worsen the ME/CFS, then what do we do?

Rhetorical question, but an honest dilemma.
 

keenly

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Very interesting to hear him confirm that mTOR may be central to this disease, and certainly you do not want to inhibit it. I and others here already suspected this but it's exciting to hear Dr. Davis confirm.
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.

Does this mean we should use Leucine?

Natural Inhibitors of mTOR

 
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keenly

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They need 5$ million a year for several years. :(

Patient donations aren't going to be enough. And the NIH isn't providing enough funding. What should we do? Lobby for specific funding for this project? Go begging to billionaire philantropists?
Anything we can. I asked Raymond Perrin about this. He recently met a VERY rich businessman who's daughter has CFS. The businessman is flying him over to teach a local physiotherapist his techniques.
 

A.B.

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Interesting coincidence that I was taking anti acne medication around the time the illness started (with no apparent trigger). Guess what:

Substantial evidence from translational research suggests that all anti-acne agents operate by a common mechanism: the attenuation of exaggerated mTORC1 signal transduction in the pilosebaceous follicle.
https://www.researchgate.net/public..._of_mTORC1_in_acne_pathogenesis_and_treatment

PS: the prevalence of this illness also peaks in teenagers (and later in women in their 30's), at a time when they would presumably be most likely to also be taking some anti acne product. But I'm done with confirmation bias and coincidences now. Just making a mental note in case mTOR really turns out to be important.
 
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keenly

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Interesting coincidence that I was taking anti acne medication around the time the illness started (with no apparent trigger). Guess what:



https://www.researchgate.net/public..._of_mTORC1_in_acne_pathogenesis_and_treatment
I was the healthiest person in the world till I began taking antibiotics for teenage acne. Never sick for more than a day, tremendous alcohol tolerance, to the point I did not drink with mates because I found it hard to get drunk, strong, never tired and ate like a horse, without ever getting fat.

The human body works fine till it is messed with.
 

Wolfiness

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Ohh that first question was mine!! Oh the pride!! :redface: Ashley read it out word for word which is another example of the OMF treating us with dignity, after decades of people kindly treating me as delusional despite their being unable to understand basic questions. Thank you :redface:
 
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Ben H

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Same here!!!!!!!!!!!!
Thanks so much @keenly

They need 5$ million a year for several years. :(

Patient donations aren't going to be enough. And the NIH isn't providing enough funding. What should we do? Lobby for specific funding for this project? Go begging to billionaire philantropists?
Patient donations are helping a huge amount and are sustaining the research and allowing it to advance.

Sure we need NIH to fund, and to fund ASAP, but patients donating is incredibly empowering. It has already funded the Severely ill Big Data study, and we have funding for future studies too. Please don't underestimate patient donations, though I understand your point and agree NIH needs to fund Prof. Davis.

We do need to appeal to philanthropists so any suggestions or thoughts on that would be great. Its something OMF are working on.

I began to be tired after antibiotics KLACID! I just send money for research, I hope to live to see treatment
Thanks so much@Petko21 !