Murph
:)
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I didn't transcribe this. The entire thing has been pinched from Reddit. Credit for it is due to a user there called u/wackycrazybonkers
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You can see the whole event here: https://www.facebook.com/OpenMedicineFoundation/videos/1463510460420037/?t=2449. Ron starts speaking at the 42 minute mark.
I think the wholly new parts here are:
1. There are several possible metabolic traps to test;
2. Patients may not have stumbled on this because you'd get worse before you got better.
3. What your food gets converted to is important (linking here with @ChrisArmstrong research presented ta last year's omf symposium?)
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Transcript of Ron Davis' speech.
Starts by thanking patients for donations and berating the NIH for withholding funding, mentions wanting to get a cheap diagnostic test rolled out to GPs
So the other thing to tell you just a little bit about, something that I'm pretty optimistic about, but I don't know for sure, this is the way research goes. And that is; we see a lot of effects on all your small molecules that are in your body, that your food gets converted to and that's what runs your whole body. We also have a lot of genetics that we've done, sequenced people's genomes, we have a tremendous amount of that data. And so we've been using that and comparing that data to all these metabolites and how they're generated. And then we have people who do systems biology, putting all this together and making networks of it.
When we've done that, we run into a possibility that what we call a "metabolic trap" is possibly there. Now that's just an idea, at the moment. But it's an intriguing idea because it kind of seems to be what happens to people when they come down with this disease. So many people go to bed at night feeling fine and waking up in the morning and there's something wrong. It's like a switch got thrown. That's exactly how a metabolic trap would function. And it also is a possibility when you look at the data that you can see why, in fact it's also one which could get worse and then better and then worse again and then better, and you never can get out of it, and that's why it's called a trap.
So it fits the behaviour, but the question is; is it right? So we're not talking about it in any detail, because I'm not sure if it's right, but we have found now several traps that are possible and we're going to test each one of them. And so now if it's true that it's a trap, and that's why I wanted to share this with you, is that it will probably be very easy to cure. That's what I'm excited about, because I want to cure my son. I'm desperate to do that. And it won't be very expensive either. And the treatment would be done in an outpatient kind of setting, basically under supervision of a doctor to make sure nothing goes wrong, but it's not going to require surgery, it's not even going to require a new medication.
And again, that's why we focus on what we focus on, and that is, I don't focus on trying a new drug, it's going to be twenty years before we can use it. And so, re-purposing drugs is one way to do it, but even trying to figure this out, what's causing it, so that we can come up with a very effective cure for this that doesn't involve drugs.
Now the complexity of this trap idea is such that I can't imagine anyone accidentally discovering it. And so we've also first looked at what people have tried, what made them better and so forth, but they would probably have never stumbled across this because to get out of it requires a very special treatment that probably nobody would have done.
Also when we monitor this computationally it's very likely that patients, if this trap is true, they will actually get worse with the treatment before they get cured, and that would prevent somebody from doing it, because they'll try it, get worse and stop. So that's why it needs to be very carefully supervised and analysed, we need to figure out the tools for doing this. But anyway, that's the next stage. If we're wrong, it will lead to the next venue. And that's how the research goes. But we clearly don't have enough of it.
Ends by thanking anonymous donor pineapplefund for their donation and calling for help with research and more funding.
You can see the whole event here: https://www.facebook.com/OpenMedicineFoundation/videos/1463510460420037/?t=2449. Ron starts speaking at the 42 minute mark.
I think the wholly new parts here are:
1. There are several possible metabolic traps to test;
2. Patients may not have stumbled on this because you'd get worse before you got better.
3. What your food gets converted to is important (linking here with @ChrisArmstrong research presented ta last year's omf symposium?)
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