Cort
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I always love listening to Ian Lipkin. He's very clear and very organized. You can find the transcript and call here - https://www.nih.gov/research-traini...ves/mecfs/nih-me/cfs-advocacy-call-march-2018
Some highlights for me - Lipkin emphasized subsets
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Metabolomics - It was good to hear about the metabolomics work Lipkin is doing with the same people I believe Ron Davis and Bob Naviaux are working with. This is good because the machines are so "touchy". Really looking to the spinal fluid work with Simmaron
Nevada Center - nice to see that Lipkin is pleased with the work done by Lombardi at the former WPI
Some highlights for me - Lipkin emphasized subsets
And as a clinician as well as a scientist I can tell you that I've seen many patients with these disorders and there are people who respond to antivirals and there are other people who respond to modifiers of the microbiome. And there are other people who respond to drugs that alter neurotransmitter levels. And I'm not certain that these are all the same. But they manifest with fatigue and cognitive dysfunction.
We also have an effort to try to identify these phenotypes by mining these databases that we have, using state of the art methods that are typically employed by people who want to figure out whether or not the stock market or particular stock is going to go up or down. Machine learning, ways in which you find patterns that may not be readily apparent using traditional methods for analysis of complex sets of information.
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Because I think we're still in the early days of understanding what, you know, what comprises this set of syndromes. If you talk to people 50 years ago about cancer, you know, we're going to have a war on cancer. There are many different types of cancer. And they have different causes and they have different solutions. And I think we may be in the same situation with ME/CFS. I'm not saying that there are going to be as many types as there are forms of cancer, but we have some individuals who have a rapid onset following what seems to be an infectious illness. There are other people who seem to have an allergic prodrome. There are other people from whom this comes out of the blue. I'm not certain that these are all the same thing.
And then you have some individuals who as I said earlier appear to respond to changes in diet that alter their microbiome. There are other people who respond to herpes medications. So until we have a better set of what I would like to refer to as biomarkers, that allow us to distinguish between all these different types of ME/CFS, it's going to be difficult to come up with a coherent plan for diagnosis and treatment. And I think what we're doing right now is chipping away at what we need to learn as rapidly as we possibly can.
So I'm encouraged by this because I think what it tells us is that as we understand more about this set of illnesses, some people will be treatable with one set of approaches and other people with a different set of approaches.
Metabolomics - It was good to hear about the metabolomics work Lipkin is doing with the same people I believe Ron Davis and Bob Naviaux are working with. This is good because the machines are so "touchy". Really looking to the spinal fluid work with Simmaron
Terry Gilmete. Hi, this is Terry Gilmete and I've had ME for 32 years now. And I have a couple of questions. The first question is for Dr. Lipkin. I’m interested a little more about what's happening at UC Davis. What is the name of the project and who is in charge of it? And could you tell us a little bit more about what's happening at UC Davis?
Dr. Ian Lipkin: The person, so the person who's doing the metabolomic research there is Oliver Fiehn, F-I-E-H-N. He's the director of the metabolomics center there. He's a member of the Metabolomic Society, an officer of the Metabolomic Society, a graduate of the Free University and from the Max Planck and is absolutely top draw. And when we decided to integrate metabolomics in our center, I interviewed directors of metabolomic centers across the United States, actually across the world and flew out and met with him and decided that his team was the one with which we wanted to work.
We have now done two projects with the Fiehn group: one on plasma using materials from the Chronic Fatigue Initiative supported by the Hutchins Family Foundation and the other is a set of spinal fluids that we analyzed in collaboration with Dan Peterson in Incline Village. And I will tell you that this is tantalizing and unfortunately not very satisfactory for you. But and I wish it were different, but I can't present the data because if I do that then it will never get published. That's just the way these things go. But I'm hopeful that they'll be out there soon.
Nevada Center - nice to see that Lipkin is pleased with the work done by Lombardi at the former WPI
Now in terms of genes, one of the things that I think we need to do because there has been some discussion of looking at GWA studies. I think there's one GWA study that came out of Nevada that was done by Lombardi what was quite interesting. But and they looked at something like 650, I'm trying to remember. I don't want to misspeak. But in any event, they had a fairly comprehensive microarray approach for looking at exomes and as well as introns.