OK. My attempt at a transcript follows. I can't always follow the conversations just by trying to listen so I tend to type them out if I can. Don't take this as verbatum for heaven's sake - my skills in this regard are hopeless lol.
Oh let me know if any of those emails are relevant. I am listening to them later:
'TWiV 151: Dear TWiVers:
http://www.twiv.tv/2011/10/02/twiv-151-dear-twivers/#comment-325127347
2 October 2011
Professor Vincent Racaniello:
I spent the last few days at the Scientific Advisory Board meeting of the Chronic Fatigue Immune Dysfunction Syndrome Association of America, so Im spending time working on this disease and I am concerned about it. And I met there many patients with the disease and to each one they recognise that XMRV is over. They were patients and they were parents of children with the disease and again all of them understand that XMRV and CFS [i.e. the association or link] is finished.
Alan Dove: How was that meeting?
VR: Great meeting. The best part for me was meeting people with CFS.
AD: Yeah. I would think so
VR: A variety of mainly people in their thirties and forties, who had started careers and then were disabled and cant work any longer or can only work part-time. I met a woman who was in fact a fan of TWiV who was working as a lawyer who was disabled by CFS and is now on disability, and many other individuals who cant work or do the things they want to do.
The interesting thing is they can remember the day that it began with an infection of some kind. So maybe, any kind of infection triggers an immune response that is abnormalfiguring out what that is is what we have to do.
I met a lot of the physicians, a number of the physicians who treat CFS patients Dr Nancy Klimas from the University of Miami was one of themshe was thereand also Dr Sidney Bateman from the University of Utah both very dedicated physicians who care about these patients and have got clinics up and running and are also doing clinical research to try and find out what is going on.
So the CFIDS Association is trying to sort out how to support the best researchhow to raise money and then support the best research to find a cause and eventually a cure.
AD: Cool
VR: So Im happy to participate in that and I dont get paid for this it is my time I am giving to this organisation, and I was introduced to this organisation through blogging and podcasting. They realised were dedicated to this so I was asked as a virologist to join. I might add I also met Dr Robert Silverman, who has been on a number of these XMRV papers, in fact who authored the retraction we discussed last week.
RC: A real gentleman, Bob.
VR: Hes a good guy, actually he says Hi Rich
RC: Thank you. Hi back.
VR: And he is a very nice fellow.
RC: His brother works upstairs here.
VR: Thats what he told me. And you know you cannot tell what a person is like through emails.
RC: No.
VR: Not at all.
RC: I have always had the greatest respect for Bob let me tell you.
VR: Yeah Bobs a good guy. So hes also a member of the Board [Scientific Advisory CFIDS] and you know we are going to meet periodically and try and figure out how to crack this it is not going to be easy. I think it is quite a complicated disease but I am very impressed [from the virologists perspective] by its effect on these individuals there were also parents there whose children have the disease and theyre very active in trying to figure out whats going on, and so I think we should probably have an episode on CFS where we get a couple of the patients to talk about it and we talk with the CFIDS CEO and find out how theyre dealing with it
AD: Thatd be great.
RC: I think we should wait for the last bit of the XMRV thing to die-down first?
VC: Yeah probably after the ahh
RC/AD: Maybe sometime next year after the Lipkin study comes out
AD: You know I have to wonder about all these samples being collected in a very controlled blinded fashion etc. for the Lipkin study I am left wondering if a deep sequencing effort on those things might not
RC: Well hes actually going to be doing that for another Foundation I believe
VC: So there is another Foundation called the Chronic Fatigue Initiative and you can find that on the web: CFI. And theyve given a large amount of money to Columbia, Harvard, Stanford and Miami and here at Columbia they are recruiting 200 patients and 200 controls and Ian Lipkin will be deep sequencing and looking for pathogens and they will be establishing a Biobank of samples for use by other people, so its not going to be any one Foundation that is going to be doing this so it is good that a second one is come into this..
RC: Well thats good and as we all know now from all the experience, having a number of different laboratories involved in taking a number of different approaches is important for getting at the real truth.
AD: Yes.
VC: I understand by the way that another paper is imminent. It is not the Lipkin paper it is something else. So it will be out in the next couple of weeks
RC: Right...
VC: be telling you about it. Right lets do some emails'
p.s. it isn't always obvious if Rich or Alan are talking btw
