What an exciting presentation took place at the San Francisco #MissingMillions protest site on May 25th. Not only did Ron Davis of the Open Medicine Foundation say that he thinks (very early in the OMF's End ME/CFS project, by the way) that not only do they believe that they're really onto something, but that they're already pursuing compounds that might help and talking with drug companies.
Obviously, it's early days yet, but the OMF clearly believes they may have opened an important new beachhead in this disorder - one that could explain much.
First some ME/CFS and OMF news....
The Consortium Approach Wins Out
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Whittemore's eyes widened: here was a comprehensive plan featuring some of the top researchers in the country. I wouldn't be surprised if the mere presence of this plan featuring these figures helped convince Whittemore ithat she could successfully push the NIH hard to take ME/CFS seriously.
The plan proposed that a consortium of researchers from across the country participate in a methodical effort to understand and cure ME/CFS. Yesterday, Vicky Whittemore proposed that the NIH fund a consortium of research/treatment sites that would work in unison to solve ME/CFS.
Big Data is In: Harvard / Stanford to Produce Unique Computer Program for OMF
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- How do ME/CFS patients’ particular biological test results compare with or differ from healthy people and with people with other diseases?
- Is there a biological footprint for ME/CFS patients, are there defined subsets, and how do they compare to healthy people or people with other diseases?
- Will some treatments for other diseases of similar symptoms also work on ME/CFS?
Transcript of Ron's talk at #MillionsMissing protest in SF - From Janet Dafoe (Ron's Wife)
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.
[fright][/fright]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!".
[fright][/fright]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.
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?
Ron: Absolutely,
Crowd: GOVERNMENT FUNDING!
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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