Ron Davis at San Francisco rally: very close to a biomarker, looks like a mitochondrial problem

Sasha

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I thought this deserved its own thread!

Thanks to @Marky90 for his initial transcript of what Dr Ron Davis said in this footage from the San Francisco #Millions Missing protest earlier today (the audio is a bit hard to make out at times).

Edit: Big thanks to @Rose49 (Janet Dafoe) and Ron Davis for checking the transcript and providing a cleaned up version!

I've reformatted a little for readability (without changing the text).

Janet Dafoe said:
Ron Davis: I’m Ron Davis and my son is missing. Can you hear? OK. Ha ha, thank you.

Linda Tannenbaum has really helped us a lot in raising funding.

We have enough funding that we managed to assemble a very small team at the Stanford Genome Technology Center. This team is really excellent in doing research. And we are making progress.

Crowd: Yaaay!

Davis: Now, it is very clear what is needed: We need more people doing research in this area. I don’t want all this money just to fund my own lab. I want to recruit other people in other labs that are specialists in things that need to be looked at. And we are now doing that.

Crowd cheers.

Davis: I think that we are very close now to finding a molecular diagnostic marker.

Crowd: Yaaay!

Davis: And we also think we have a bit of an understanding of what this disease is. A lot of the ideas that have been around about what this disease is, I think are wrong. And, it`s only because they look at one of the symptoms.

I think what this disease is, is a fundamental shutdown of the energy generation system in the body. And we can see that from all the molecules we look at. So our type of research is collecting massive data.

And we have developed a lot of the technologies that in fact allow you to see massive amounts of data. And we have fantastic people to analyze that data. And it really looks like it’s a mitochondrial problem. And in fact it doesn’t generate very much energy.

And that can cause almost all the symptoms we see. We can make a model for that and explain almost everything about what we see in this disease. It explains the immune system problems; it explains the brain system problems, and so forth.

Now, the problem is of course, we have to figure out exactly what it is, and what’s going wrong. Probably we need more people to do that, and then we need to figure a way to undo it. We need to figure out a way to reactivate the energy generation system in the body.

I`m optimistic that we can do that, now that we can begin to understand what the problem really is. And so in fact we are actively pursuing compounds and drug companies that might offer some help. We want to do this on a fast track basis.

So we want to figure out what it is, figure out a way to do a diagnostic, and then look for things that might treat it. We want to do that as quickly as possible. I do NOT want to wait another thirty years.

But this is not gonna happen without what?

Crowd: GOVERNMENT FUNDING!

Davis: Absolutely.

I have a lot of fights with the government about this, because I don’t think they actually understand research. The two grants that I put in, they didn’t like it because it had no hypothesis. I said "of course not!". What you have to do when you start looking at a new disease is to make a lot of observations and figure out what it is. And from that you make a hypothesis and then do a test.

They have it all wrong. They said they turn down a lot of grants because they don’t have a proper hypothesis. That’s not the way to solve this problem. Uh, when we launched the Human Genome Project, we did not have a hypothesis. It was incredibly successful, and it’s totally revolutionizing medicine right now.

So it’s going from one treatment fits all, to personalized treatment. And that is absolutely what we need for ME/CFS. We think that probably a lot of the patients are slightly different in their behavior, and this shutdown, and the consequences of that, and probably do need specialized treatment.

Once we figure out what it is and then some treatments, we also have to figure out a way to disseminate all those ideas to the medical community, so that everybody can get treated.. That’s a daunting task, and that’s not going to happen without what?

Crowd: GOVERNMENT FUNDING!

Davis: Absolutely. But I am upbeat and optimistic that we will get somewhere, if we can just get...

Crowd: GOVERNMENT FUNDING

Davis: Absolutely, thank you.
Here's the donation page for the Open Medicine Foundation - let's give Ron Davis loads of money! Bring out your :moneybag::moneybag::moneybag::moneybag::moneybag:!
 
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Never Give Up

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I didn't last long before I had to go home and crash on the couch. But I managed to get a couple pictures of Dr. Davis.
Nice pictures @Webdog, so glad you were able to go!

Do you know if the woman holding the microphone and red folder is a journalist?
 

ScottTriGuy

Stop the harm. Start the research and treatment.
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We should really all donate as much as we can. It's the fastest way to move it forward.
I just donated some money and will keep doing so.
Because it's not like i can spend money on doing something fun anyways when i am in bed, lol.
Ditto and ditto.

My best investment this week. I may getting it back in health a 1,000 fold.
 

Janet Dafoe

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I thought this deserved its own thread!

Thanks to @Marky90 for his transcript (below) of what Dr Ron Davis said in this footage from the San Francisco #Millions Missing protest earlier today (the audio is a bit hard to make out at times).

Note that I've changed the formatting of the transcript a little bit and tidied up a few typos, for readability.



Here's the donation page for the Open Medicine Foundation - let's give Ron Davis loads of money! Bring out your :moneybag::moneybag::moneybag::moneybag::moneybag:!
Thank you so much! I'm Janet Dafoe. I'd like to fix this transcript so it's accurate. How can I do that? If you send me a copy and I fix and send back can you repost? I have to take care of Whitney and don't have time to retype it. There are a couple of things it would really be better to correct....
 

NL93

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How can Ron Davis identify a biomarker w/a few private donations & a couple of pals @ Stanford in, oh say, 6montgs, a year & the NIH couldn't do squat in 30 years?

Some ppl @ the NIH need to go ...
I know right. Also shocking that Melvin Ramsay, 38 years ago (!), said the mitochondria were important in ME. There was clear evidence for that, even back then. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425324/)

NIH has done nothing. So much years lost. It makes me all very mad at times. :mad:
 

Sushi

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I'd like to fix this transcript so it's accurate. How can I do that? If you send me a copy and I fix and send back can you repost? I have to take care of Whitney and don't have time to retype it. There are a couple of things it would really be better to correct....
The people who posted this are asleep right now. I'll send you a copy by PM. Look for it in your inbox. You can send it back to me and I can replace it in the original post.
 

rosie26

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I haven't been able to tone my muscles up since I got sick with ME - they just won't tone up and I used be able to tone my muscles up in 3 weeks before I fell sick. There has to be something showing up in this area and I'm really pleased to hear that something is.
 

Janet Dafoe

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The people who posted this are asleep right now. I'll send you a copy by PM. Look for it in your inbox. You can send it back to me and I can replace it in the original post.
How do I edit it in my inbox? (Sorry I'm not totally savvy here!)
 

Sushi

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How do I edit it in my inbox? (Sorry I'm not totally savvy here!)
You'll see a red 1 at the top right of your screen where it says inbox. Click on it and you'll see a "Conversation" with me. Open it, then hit reply at the bottom and you will have editable text. Send it back to me and I'll substitute it with a note that you have corrected it.
 

Kati

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Could someone please post the corrected transcript as a new reply so we get notified (instead of simply edit the one post)
 

Sushi

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Could someone please post the corrected transcript as a new reply so we get notified (instead of simply edit the one post)
How about if I just post a note in this thread to say that the corrected version is in the first post? That would pop it to the top of New Posts and also generate an alert for those "watching" the thread.
 

Janet Dafoe

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How about if I just post a note in this thread to say that the corrected version is in the first post? That would pop it to the top of New Posts and also generate an alert for those "watching" the thread.
That would be good because the other one needs to be gone! I'll be done with Whitney in a little while and then I'll do it. Ron already made a pass at it.
 
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I know right. Also shocking that Melvin Ramsay, 38 years ago (!), said the mitochondria were important in ME. There was clear evidence for that, even back then. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425324/)

NIH has done nothing. So much years lost. It makes me all very mad at times. :mad:
Yes, especially upsetting to me as they've had that evidence for as long as I've been alive & if they had done something, anything with it i (and many others) may never have fallen ill!! (And I certainly wouldn't have degenerated to the point I am now if anyone had told me not to push myself as I could do serious damage i wouldn't recover from!)