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Klimas XMRV Lecture in Florida

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by _Kim_, Oct 25, 2009.

  1. Kati

    Kati Patient in training

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    Nancy Klimas Lecture

    The videos are posted on Dan Moricoli's website
    http://cfsknowledgecenter.ning.com/video

    Part 5 and part 12 is missing at the moment, but the rest is fantastic, fascinating and very informative. :)

    Thank you Dan, and thank you Dr Klimas!

    ETA Part 5 and 12 are up now
  2. fresh_eyes

    fresh_eyes happy to be here

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    Yay! Two hours of Nancy K! Thanks, kati.
  3. Summer

    Summer Senior Member

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    On testing right now

    On testing right now:

    Klimas: "If I ordered a blood test on you right now, what would happen to your soul if you were negative." "Don't rush to get a test right now." "You would not be able to bear the false negative right now."
  4. gracenote

    gracenote All shall be well . . .

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    excellent lecture by Dr. Klimas

    These are excellent. She covered a lot of ground and made some very good points. I wish I had a transcript. Things just go in one ear and out the other. I need to read them to remember.
  5. _Kim_

    _Kim_ Guest

    gracenote, I would like to help transcribe the lecture, but it's too much for just one person to do (2+ hours long). I'll take on section 3 & 4. Would anyone else take a section to transcribe?
  6. gracenote

    gracenote All shall be well . . .

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    got excited

    Kim, that's a great idea. I got excited and was trying to figure out which section to volunteer to transcribe when I came back to earth and realized that, oh yeah, I'm barely able to keep myself fed at the moment, and pay my bills, and . . . shoot, I've got to get my laundry done this week.

    I really like doing stuff like this. But I'm trying to pull myself together to complete my MA so little left to do, no extra brain right now. So sorry, it can't be me.

    I'm excited about your research ideas, Kim. Please don't take on too much. It can add up quickly, and CFS can be very sneaky.
  7. _Kim_

    _Kim_ Guest

    Oh gracie,

    I will heed your warning. Tomorrow that is :p. I just finished transcribing Section 3. :)
  8. Marylib

    Marylib Senior Member

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    Heed it now, young lady

    If you do not go rest, we are all going to come over to your house and take a switch to you.

    I am not exactly sure how....but uh....I'll think of something

    from an overbearing non-mother bossy person :p
  9. _Kim_

    _Kim_ Guest

    Section 3 - XMRV, NK & T cells, latent & retro viruses

    Nancy Klimas Lecture
    Section 3 - XMRV, NK & T cells, latent & retro viruses


    So what is this virus X-M-R-V? Well, the RV means retrovirus. So that puts it in a family of viruses, retroviruses, that we actually know quite a bit about. And the X is xenotropic. M was mouse. This virus started in a mouse. Now theresya know viruses start somewhere. Theyve got to start somewhere. Like the HIV virus started in a monkey. Its a monkey virus that eventually evolved several hundred years ago into a virus that could infect humans. So we got this lousy virus, HIV.

    XMRV is in its own evolution. And it jumped from mouse to human at some point. We dont know when, but probably not in the too terribly distant past. Well, that doesnt mean a lot, because in Darwin terms, distant past could be 100 million years, but these guys think like that, the evolutionary biologists. That wasnt long ago, a thousand years ago or so. But in this mouse virus, it could have been in the last century. Thats the sense of it.

    About 3-4% of people have this virus and theyre not sick. And thats another part of this. So theres this background population. Now, Im just saying that flat out, but you know I gotta tell you that the research on this virus is only 2 years old. And so, we dont know very much about it. And theres probably regional differences. There might even be continental differences. We dont know. Theres been nothing done anywhere else. They did some studies originally this virus was found in prostate cancer. So most of the work was done in that area and theres two studies: one in Germany and one in Ireland that failed to find this virus in their patients. Now, whether theyre using the same technique or its not in Germany, its not in Ireland, we dont know. So, theres a lot of questions still to be answered with this virus.

    This Science paper was amazing for a number of reasons. First, this team had put together such strong science that they could go for a Science paper. And for those of you who arent in the land of science, Science is like the Mecca of publication. If you get your stuff in Science, thats the best place you could possibly put them. And they dont take just anything and they sure, sure, sure dont take something unless its extremely well done, validated and tested out. So they took this paper. And if you read this paper, they not only took it, they put it in Science Express. They thought it was so important, they published it on a very fast track. And so, that was important.

    And if you read the paper, youll see that found this virus the first way they looked. They backed up and looked from a whole different angle. Still found it. Backed up and looked from another angle. Still found it. Then, in two other ways, they had five different kinds of ways they looked for this virus. And they were able to find the virus. So I think thats why Science was so impressed. They also used a very big population. They had 100 Chronic Fatigue patients 101. And they had more than 200 controls. So thats usuallyscientists like that kind of stuff.

    And then, the interesting thing was in this paper, the first 20 patients they studied were Chronic Fatigue patients that had developed some kind of Cancer. Thats actually how they got the Cancer guys attention, Im assuming. Because Dr. Petersons got 30 years of stuff in his freezer and dug out everybody in his whole population that had ever gone on to develop Leukemia or Lymphoma or any other kind of Cancer. They pulled those out first and thats actually where they first found it and thats what got their interest up. And then they went back and looked at a bunch of others. The way they looked is very sophisticated and they found 67% that way. And then they tried to find it in all these other ways, when they added everything together, they could find the virus in roughly 95% of the patients using one technique or another, but not necessarily consistently, no matter what technique they used. But it means that theres at least 67% of people in that Reno cohort and possibly quite a bit more.

    So what is this virus? Its a mouse virus. It was first discovered in 2005. It was discovered by prostate cancer researchers looking for a virus, viral causes of Cancer. So they found it in that study in 40% of prostate cancer. Another group looked and found it in 23%. And so there have been two studies that said: the virus is in prostate cancer. Other groups though, have not found it - in Germany or Ireland so its still considered somewhat controversial. Its a different strain than the one seen in prostate cancer. Its not exactly the same. Okay? Ive already had patients whose husbands had prostate cancer thinking that they somehow infected their husband. Oh my God, I gave my husband prostate cancer. Dont think that way, okay? Its a different strain of the virus. Theyre related, theyre closely related. But we dont know enough to even pretend to go that far with assumptions.

    Its a virus that doesnt have a lot of mutations. And what that means to the virology world is that it doesnt change very much, its not shifting around, theres not a whole bunch of different kinds of it. Like there is with HIV, where within a few weeks of applying an antiviral, the HIV virus can mutate away and escape and go off and do its own thing. So this is a pretty stable virus. That bodes well, particularly for vaccine work. That bodes extremely well. We dont know what that means to the antivirals yet. It just depends on how much replication is going on.

    Why does it fit into Chronic Fatigue? Well, theres a lot of good reasons why it fits in to Chronic Fatigue. Those of you who live and breathe this stuff might have heard me talk about natural killer cells a little bit. ((laughs)) NKs are really broken in Chronic Fatigue Syndrome and natural killer cells are part of your defense that prevents latent viruses from reactivating. And they really, really dont work well in Chronic Fatigue Syndrome. And our group has done 20 years of work to try and figure out why and we know why. And we also extend that to say: these natural killer cells that dont work are closely related to a different cell, cytotoxic T-cells. And they dont work either and between the two of them, that is your antiviral, latent viral reactivation system. Both of the systems are broken.

    So, enter a virus that infects and affects natural killer cell function and thats this one. And infects and affects T-cells, cytotoxic T-cells. Thats this one. So were kind of keen, we dont know for sure, I mean this so early in the work, weve gone all of three weeks since that paper came out. Theres going to be a lot of work to be done. But it would make a lot of sense, a good hypothesis to construct if this virus is in there mucking up cell function, and that would make a lot of sense to whats going on.

    It also is a virus that can infect tissues that arent white blood cells. And weve always thought: something like that has to go on in Chronic Fatigue Syndrome because you all have some neuro-inflammation. Your brain has a low grade level of inflammation. And you have some inflammation in the tissues that make hormones, particularly the hypothalamic-pituitary axis. And this is a virus that has some tropism or infects that type of tissue. So it starts to make the whole picture come together. Now we dont know enough about this viruss tropism or what stuff it likes to infect. This is just sort of the first look and some of this may change as we get more sophisticated and look with better ways. But the sense is this virus, if its acting like its cousin virus HIV that likes to infect those kinds of tissues, that its going to have receptors that let it into other places too. Anyway, I think it fits well and Im very excited about that fit.
  10. _Kim_

    _Kim_ Guest

    Okay, no more for tonight. I'm gonna watch an old episode of House and go to bed. Promise.

    Goodnight gracenote, goodnight Marylib.
  11. blackbird

    blackbird caged.

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    I'll take segment one and do it tomorrow.

    See how that goes, and maybe add a second.
  12. fresh_eyes

    fresh_eyes happy to be here

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    Hey cj, re: letter campaign, if you click the link in my signature, that goes to the CAA's online advocacy letter sender wizard thingy. :)
  13. _Kim_

    _Kim_ Guest

    Thanks blackbird! I learn so much more doing the transcriptions. I stays in my brain that way. I can now explain how this virus may be "mucking up" cell function.
  14. jewel

    jewel Senior Member

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    So much to think about. What a wonderful presentation, informative, balanced and yet optimistic. Thanks for transcribing, Kim and Blackbird. And thanks for posting that these were up, Kati. (I sure wish she were my doc!) A form letter or phone script would be great; I also don't feel knowledgeable enough at this time to draft one. I do know that staffers and interns keep track of the issues for representatives/senators. One of the reasons petition-type letters are helpful are that one can forward them to friends, family, etc. with the hopes of quickly adding to the numbers reaching congress. And they're easy to follow through with. I will do the super easy advocacy linked by Fresh Eyes. Take care, J
  15. fresh_eyes

    fresh_eyes happy to be here

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    Ah, yes, cj. I wonder if, if we wrote one, CAA would be able to add it to that wizard thing. ?
  16. _Kim_

    _Kim_ Guest

    Section 4: Retroviruses, Biomarker

    Nancy Klimas Lecture
    Section 4: Retroviruses, Biomarker


    When we talk about latent viruses, this is what were talking about. The guy on the top is a quiet little white blood cell hanging out doing nothing because no one has asked him, it doesnt have a job yet. If it becomes activated, its because something floated into the system, some antigen, some bug that its supposed to respond to. And in our systems we have hundreds of millions of these little quiet cells and each individual cell only knows its one little job.

    Now this ones for Epstein Barr, that ones for Staph, and that one is for some other bug. If that bug comes into the system, then that cell is the one that gets activated. And if it had hidden inside it, in its DNA like over there, if it has inside it this little piece of virus fragment, sitting in that DNA, that cell is turned on to make all of its stuff it knows how to make. It got activated. Its going to make cytokines, its going to make interleukin 2, its going to make ?? , oh and by the way, its going to make that sneaky little virus that was tucked into its DNA too. And thats what happens.

    These latent infections just sit around doing nothing until that cell is activated and then boom, they start making virus stuff. Retroviruses are funny because were just chock full of them. We have little bits and pieces of retrovirus all in our DNA. Talk about evolution, our great, great, great, great, great, great, great grandfathers got infected with some little piece of something, maybe a chunk from a mouse back then. But its not a whole virus. They have just little bits and pieces, of bust up pieces of retrovirus tucked in the DNA. We think its an important part of the way that we evolved. That we borrow DNA from other species this way and we transfer things around. If viruses carried little pieces of information into the genome back then. And some of it was bad and that didnt work out. And some of it was good and it carried on or it was neutral and it carried on.

    But there are some retroviruses that can be carried generation to generation as a whole and complete virus tucked into that DNA or rather enough DNA to make a whole and complete virus when its turned on. And this is one of those retroviruses. It can be transferred generation to generation or whats called vertical transmission, mother or father to child through the DNA. So we dont know if theres 3 or 4% of background. Theres just people who have vertical transmission or if theres some way that you can infect people back and forth in life. We dont know that at all, okay?

    But we do know that this virus is one of the ones that is vertically transmitted. We know that from the mouse data. So it can be transmitted vertically. So the question is if you have children, do your children necessarily have it? And the answer is maybe yes or maybe not. First off, theres two parents not one. And each only give half of the DNA, yeah, right? So in any given child, theres only one chance in four that you can pass on any particular piece of DNA on a good day. So you dont worry too much about kids flat out that way. And then you say: And oh, by the way in their life, they have to come across the thing that activates the virus and turns this whole mess on. And so theres a whole lot of reasons not to get all worried aboutI mean Im not saying it couldnt happen to your childrenOf course its conceivable. But whats exciting right now is were getting this, were getting the understanding of it, and well probably, knock on wood, that we will be to the position where were actually intervening effectively before it becomes a bigger worry. But, um, I dont know about kids. Im saying it is a vertically transmitted virus.

    We dont know if its sexually transmitted. I will say that there are sexually transmitted retroviruses. We know HIV is, obviously, is a sexually transmitted retrovirus. But, theres noyoud think in 25 years, we would have seen massive numbers of spousal pairs. And we have not. You occasionally do, occasionally we do see a spousal pair. It happens. But almost always those people both had acute infection at the same time at the onset and its really unclear if it was transmission between the two of them or if they had some other thing happen that kicked off the whole, the whole thing. And you see household Chronic Fatigue. I mean I do see mother-daughter, father-daughter, father-son, whateverIve seen it. But, in my clinical practice in the 25 years or so, its not very common. It doesnt happen a lot.

    So, the next slide. This virus is not HIV. A lot of people panicked when they heard this. This virus really is not HIV. Its in the same family, but its a distant, distant cousinvery very distant. And its not infecting or affecting the same cells. So, its not doing the same immunologic thing that HIV does. Okay?

    There are also other retroviruses that dont do anything that we know about. Theres a virus called HTLV-2 that I have studied myself in the past, and many others have, and its just sitting around doing nothing. Its reallyits vertically transmitted, it even replicates, and it doesnt cause much in the way of illness. So, that doesnt necessarily mean that just because you find a retrovirus, its definitely the deal. And not every retrovirus is big and bad and ugly. Theres another virus called HTLV-1 thats vertically transmitted and does cause an illness. And it causes a neurologic illness. And so, we have different bugs, different things.

    HIV is a retrovirus and theres at least 20 or more drugs directed at HIV. So, will those drugs work to control this virus? That is definitely the big question of the day. And the first thing to say is: some of them probably will. And the second thing to say is, but not all of themyou couldnt just pick a random one and try it.

    This ones to show you mouse going to peoplethat basically it started out way up there as a mouse thing. Mice learned to live with it. They dont have a receptor that allows this virus to become a big bad deal. So, mice just sit around for generations and generations of mice being a reservoir of virus, but not actually getting sick from the virus. But then the virus shifted and it became capable of jumping from species to human.

    So, this was the study. They had in their freezers samples from people that werent from their cohort. So, these were not just Reno samples. There were samples from Florida, from California, from North Carolina, and other places. Everyone in their repository had a Chronic Fatigue diagnosis. The mean age was 55. There was two thirds women. They had this large control sample. They lookedand they looked at these patients, out of 101 patients, and they looked at the DNA, the sequences of the virus in the DNA. Its really a sophisticated way to look and they found it in 67% and in 3.75% of the 320 controls.

    Now of the negative, these 33 negatives, they went on and looked in other ways. And they found 19 of those had antibody in their plasma, so that was more than half of those negatives. But this is the big number: 30 of the negatives had virus they could identify by taking the serum of those cells, the serum from the plasma, and infecting a cell line and then growing the virus in that cell line. So they could transfer from the plasma, virus to the cell line. Now that has a lot of implications and its certainly the reason why, in part, the CDC, the NIH, and others that really care about the blood industry are looking long and hard at this. They found the virus, a transmissible virus, in the plasma and they were able to infect cell lines. So it is suggestive of an infective component, at least in the blood. And then there were other ways, so they worked out that they were able to find 99 of the 101 patients in that way.

    Now think about that for a minute. We define an illness by a bunch of symptoms. Now, Ill say Dr. Peterson is a really fine doctor, and Im quite certain that hes not misdiagnosing Chronic Fatigue Syndrome. Hes really splendid. So, it could be that he has a really clean, tight population of folks in his freezer. But I would say, I think Im pretty damn good, and I think if I pulled out stuff from my freezer, there might be a couple of MSs in there or something else that evolved down the line. I mean, Im not sure. But its pretty impressive that out of 101 CFS defined by clinical case definition or a research case definition that they found 99 with virus. And if this is the case, thats pretty exciting. Its pretty impressive. And, oh, by the way, we have a biomarker. Not a small deal. A biomarker the virus itself. No better biomarker than something thats clearly, tightly associated with an illness.
  17. Cort

    Cort Phoenix Rising Founder

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    Fantastic Transcriptions! thanks. I'll put them on Phoenix Rising website if you don't mind - properly referenced, of course.
  18. _Kim_

    _Kim_ Guest

    Go for it!
  19. _Kim_

    _Kim_ Guest

    I'm going to transcribe section 6 - then I'm done. I already see Koan and gracenote and Marylib getting ready to whack me. (I'm having a good day - feeling okay except for the yucky Biaxin nausea and bad taste in my mouth - will not do more than I feel up to. I pinky swear)
  20. fds66

    fds66 Senior Member

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    I'm giving section 9 a go. Will let you know how I get on.

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