Tate Mitchell post on Co-Cure:
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1706c&L=co-cure&F=&S=&P=58
From The Microbe Discovery Project-
https://www.facebook.com/microbediscovery/posts/1372480439487653
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(The following is an unofficial transcript of Dr. Koroshetz's presentation and exchange between Koroshetz and Lipkin)
Dr. Koroshetz: Myalgic Encephalomyelitis and Chronic Fatigue Syndrome is an area that's really been completely under-investigated across the country and Francis (Dr. Francis Collins, Director of the National Institutes of Health) is you know, really courageous and went out there and said the NIH is going to change that and so what we're doing is we're having an intramural study that's underway and after this meeting I'm going to go over there and see how they're doing to really try and understand what are the causative features, pathological features underneath this unusual condition where people are completely disabled for decades because of this terrible fatigue and inability to exercise.
We also, because there's such a poor research environment out there, what we're doing is we have FOA's (Funding Opportunity Announcement) out now to build Centers that will bring new people in, start research going, and hopefully then populate out further to allow folks to submit really high-quality grants to NIH. We're developing common data elements and trying to work with the community which feels terribly ignored and quite angry over this, over the last decades but I think we're making definite inroads there and getting the trust rebuilt
(Koroshetz goes on to discuss other topics and finishes his presentation and asks for questions)
Lipkin: First, the nodding syndrome story was terrific. I followed that for years.
Koroshetz: That's a very strange thing, yeah. We don't know for sure if it's right, but...
Lipkin: I'm not as exited about the investment in ME/CFS.
Koroshetz: Uh-huh. Why is that? It's small, right?
Lipkin: You know, it amounts too, by the time you're done kicking in for various things, it's about eight hundred thousand dollars a center, per year, in direct costs and if you involve many organizations, that is very little to do the science. Is there any chance that that might be increased?
Koroshetz: Well, there's always a chance, I think the goal was that this was not the solution but the seed to grow the research that could then come in through regular mechanisms or else to kind of add on centers so we can kind of move the field across because, I mean, I think if we can fund three, three or four centers, that's, you know, that's not gonna do it. We really- we need probably twenty across the country.
Lipkin: Well I don't know if you need twenty centers but if you look and what NIAID (National Institute of Allergy and Infectious Diseases) has done with centers that have been built around emerging infections, they started out around eleven and now they're around six, and you know, but, eight hundred thousand dollars for a center is... it's a challenge.
Koroshetz: The program is vague but the program is six million a year, that's how much we have.
Lipkin: I understand that but if you do the math on that, and they take- these are getting very granular but you've gotta kick in three hundred thousand dollars for some cross-center projects-
Koroshetz: Yes, across...
Lipkin: You have to have an admin core and by the time you remove that and the icing and everything else it's about eight hundred thousand dollars a year in direct costs, which you know say you split across three or four institutions, it's less than- it's far less than an R01 for each of the investigators. I just- it's- it's- it's a problem.
Koroshetz: No one ever comes to me and said they gave me too much money. But you're right we gotta move this field, it's gonna take a lot of money
Lipkin: It's gonna take a lot more money.
Koroshetz: The budget's gonna have to you know be, ten or twenty times what it is now. Yeah.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1706c&L=co-cure&F=&S=&P=58
From The Microbe Discovery Project-
https://www.facebook.com/microbediscovery/posts/1372480439487653
At a recent meeting of the Advisory Committee to the NIH Director, Dr. Walter Koroshetz Director of NINDS presented the current program of work at NINDS - including ME/CFS. Dr. Ian Lipkin is on the Advisory Committee to the NIH Director and Dr. Lipkin asked if there was any chance, with respect to the recent Collaborative Centers RFA, that this funding could be increased. He explains that there is very little in the way of direct funds for the science that is needed. The discussion was interesting.
You can watch Dr. Koroshetz briefly talk about ME/CFS and their aims at the 2:25:00 time point into the video. You can watch the discussion between Dr. Lipkin and Dr. Koroshetz at the 2:34:00 time point: https://videocast.nih.gov/summary.asp?Live=23682&bhcp=1
-----------------------------------
(The following is an unofficial transcript of Dr. Koroshetz's presentation and exchange between Koroshetz and Lipkin)
Dr. Koroshetz: Myalgic Encephalomyelitis and Chronic Fatigue Syndrome is an area that's really been completely under-investigated across the country and Francis (Dr. Francis Collins, Director of the National Institutes of Health) is you know, really courageous and went out there and said the NIH is going to change that and so what we're doing is we're having an intramural study that's underway and after this meeting I'm going to go over there and see how they're doing to really try and understand what are the causative features, pathological features underneath this unusual condition where people are completely disabled for decades because of this terrible fatigue and inability to exercise.
We also, because there's such a poor research environment out there, what we're doing is we have FOA's (Funding Opportunity Announcement) out now to build Centers that will bring new people in, start research going, and hopefully then populate out further to allow folks to submit really high-quality grants to NIH. We're developing common data elements and trying to work with the community which feels terribly ignored and quite angry over this, over the last decades but I think we're making definite inroads there and getting the trust rebuilt
(Koroshetz goes on to discuss other topics and finishes his presentation and asks for questions)
Lipkin: First, the nodding syndrome story was terrific. I followed that for years.
Koroshetz: That's a very strange thing, yeah. We don't know for sure if it's right, but...
Lipkin: I'm not as exited about the investment in ME/CFS.
Koroshetz: Uh-huh. Why is that? It's small, right?
Lipkin: You know, it amounts too, by the time you're done kicking in for various things, it's about eight hundred thousand dollars a center, per year, in direct costs and if you involve many organizations, that is very little to do the science. Is there any chance that that might be increased?
Koroshetz: Well, there's always a chance, I think the goal was that this was not the solution but the seed to grow the research that could then come in through regular mechanisms or else to kind of add on centers so we can kind of move the field across because, I mean, I think if we can fund three, three or four centers, that's, you know, that's not gonna do it. We really- we need probably twenty across the country.
Lipkin: Well I don't know if you need twenty centers but if you look and what NIAID (National Institute of Allergy and Infectious Diseases) has done with centers that have been built around emerging infections, they started out around eleven and now they're around six, and you know, but, eight hundred thousand dollars for a center is... it's a challenge.
Koroshetz: The program is vague but the program is six million a year, that's how much we have.
Lipkin: I understand that but if you do the math on that, and they take- these are getting very granular but you've gotta kick in three hundred thousand dollars for some cross-center projects-
Koroshetz: Yes, across...
Lipkin: You have to have an admin core and by the time you remove that and the icing and everything else it's about eight hundred thousand dollars a year in direct costs, which you know say you split across three or four institutions, it's less than- it's far less than an R01 for each of the investigators. I just- it's- it's- it's a problem.
Koroshetz: No one ever comes to me and said they gave me too much money. But you're right we gotta move this field, it's gonna take a lot of money
Lipkin: It's gonna take a lot more money.
Koroshetz: The budget's gonna have to you know be, ten or twenty times what it is now. Yeah.