You can play it from the beginning.
Pix/reports from the #Missing Millions protests today
- Thread starter Sasha
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You can play it from the beginning.
A.B.
Senior Member
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I'm curious to know what he has found. So far no details have emerged. Were these the words he used?
Some pics from the Seattle protest -- scroll down (I'm not sure how to paste these here):
https://www.facebook.com/events/839368016192863/?active_tab=posts
https://www.facebook.com/events/839368016192863/?active_tab=posts
Dreambirdie
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Marky90
Science breeds knowledge, opinion breeds ignorance
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Yeah pretty much. I can do a quick transcript!
mango
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worldbackwards
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Perfectionist traits...I thoroughly approve of the precision with which those shoes are lined up!
Comet
I'm Not Imaginary
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I've been watching and tweeting all day. This is one of the most amazing and wonderful things I have ever seen.
Thank you so much to everyone!
Thank you so much to everyone!
I've been watching and tweeting all day. This is one of the most amazing and wonderful things I have ever seen.
Thank you so much to everyone!
Me too! Isn't it exciting?!
All these years we've seemed so incapable of putting on a big demo and suddenly...
This is all thanks to #MEAction lighting a fire under us and providing people with the tools to network and boost the signal and work together. We're so lucky to have them - @JenB, @searcher, @JaimeS.
I'm just so thrilled my shoes got to take part. I was really excited to see them in London!
AndyPR
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Clicking through to view this on Twitter and it looks like L.A. is on the case already.
AndyPR
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The best thing today for both me and my wife, as people who were able to attend, was the feeling of actually being part of something, of feeling less isolated and actually being able to take some sort of action in regard to ME. I can only hope that those of you who weren't able to get there felt something similar.Me too! Isn't it exciting?!
All these years we've seemed so incapable of putting on a big demo and suddenly...
This is all thanks to #MEAction lighting a fire under us and providing people with the tools to network and boost the signal and work together. We're so lucky to have them - @JenB, @searcher, @JaimeS.
I'm just so thrilled my shoes got to take part. I was really excited to see them in London!
Marky90
Science breeds knowledge, opinion breeds ignorance
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(Mod Note -- Final corrected version)
I’m Ron Davis and my son is missing.
Can you hear?
Ok.
Haha, 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: "yeeeey"
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
I think that we are very close now to finding a molecular diagnostic marker.
Crowd: "yeeeeeeeeey!"
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
Ron: 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!
Ron: Absolutely,
But I am upbeat and optimistic that we will get somewhere,
if we can just get..
Crowd: GOVERNMENT FUNDING
Ron: Absolutely, thank you.
I’m Ron Davis and my son is missing.
Can you hear?
Ok.
Haha, 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: "yeeeey"
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
I think that we are very close now to finding a molecular diagnostic marker.
Crowd: "yeeeeeeeeey!"
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
Ron: 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!
Ron: Absolutely,
But I am upbeat and optimistic that we will get somewhere,
if we can just get..
Crowd: GOVERNMENT FUNDING
Ron: Absolutely, thank you.
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