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J. Mikovits/A. Whittemore On Nevada Newsmakers

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by shannah, Dec 23, 2010.

  1. shannah

    shannah Senior Member

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    I don't see that this has been posted although it could be buried in one of the threads that I'm behind in reading. Please excuse me if this is already common knowledge.

    Dr. Judy Mikovits & Annette Whittmore on Nevada Newsmakers Wednesday, December 22nd, 2010 tackling the latest contamination papers.

    http://www.nevadanewsmakers.com/
     
  2. shannah

    shannah Senior Member

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    XMRV Global Action's Transcription of Sam Shad's interview with Annette Whittemore and Dr Mikovits on Retro-contamination papers
    .by XMRV Global Action on Thursday, December 23, 2010 at 12:58am.

    Sam Shad, Nevada NewsmakersReady for some good news? Here is our early Christmas gift from XMRV Global Action. Renewed HOPE from Nevada Newsmakers and the WPI. Below is our "Close" transcription of the Nevada NewsMakers TV interview with Sam Shad, Annette Whittemore and Dr Judy Mikovits, December 22, 2010.



    Discussion topics: The Retrovirology Contamination papers; medical politics; "All Systems still at Go" @ the WPI & their collaborators; and "patients, don't panic - this continues to be a time of great (science-based) hope!".



    NB: If you're pressed for time, jump to the end of this post for the key, optimistic messages from Sam, Annette, and Judy, bolded and in quotes.



    Link: http://www.nevadanewsmakers.com/video/nnmstreamb.asp?showID=1192

    Several options for downloading/viewing here: http://www.nevadanewsmakers.com/default.asp



    Interview starts around 3:00 minutes.



    Sam: Annette, can we just start out with a brief simple explanation of what neuro-immune diseases are, including ME and CFS?



    Annette: They are systemic diseases that impact the nervous system and immune system. ME/CFS is a very, very complex disease and we believe that it is infectious, that there are very many organisms involved, and that it will require a comprehensive set of treatments to bring about (clinical) change.



    Sam: The retrovirus XMRV that has showed up in research was found to be in a majority of folks not only suffering with ME/CFS but also prostate cancer. What has been the result in terms of the worldwide reaction to this?



    Judy: We have had a very exciting year, interactions with Norway, Spain, Belgium. Different groups throughout the US, in the US in the SE and NE. Many groups are into the research, excited about the research, and actually detecting XMRV in their patient populations.



    Sam: 4 papers were published this week in the journal Retrovirology and according to the WSJ it demonstrated according to the authors how easy it could be for mouse contamination to skew results on XMRV. Thoughts on Retrovirology papers?



    Judy: We’ve shown in the paper that we published last year, and in a confirmation study by Harvey Alter and Dr Lo at the FDA that it’s necessary to do multiple different kinds of tests, and one single test (PCR) won’t give you clear detection of XMRV. And because XMRV is so closely related to some mouse viruses, it’s very important not to do work in mouse lab, and to actually isolate the virus and show an immune response to the virus. We were well aware that it is possible to potentially skew results (with contamination). And hence multiple tests required.



    Sam: Were you surprised at the response to these papers?



    Annette: I was. I thought it was a well concerted effort by this group to make sure that everyone knew about it prior to our being able to have a response. We weren’t notified about it and given the opportunity to respond. … We want to thank you for this opportunity to respond and pretty much calm everyone down. It really doesn’t change the findings (of XMRV in ME/CFS). It doesn’t change the work that we’ve done whatsoever. And that we’re moving forward in very positive way.



    Sam: What do u think the motivation was, that they didn’t contact you, as you were the prime research centre?



    Judy: It’s difficult to comment on the motivation of others. It is an attempt to make certain that the patients maybe aren’t served, and that XMRV is not important. I think there is great fear about the public health risk of this virus in this disease and cancers.



    Sam: Would you explain that more deeply.



    Judy: If our results and the confirmatory results hold true, as many as 20 million Americans could be infected with a new human retrovirus of uncertain pathogenic potential. That means you don’t have to get sick, but you might. And that’s 20 M Americans, and that’s 20x the amt of HIV that was in this country in the height of the HIV epidemic in 1995. So there is great concern about public health. And that’s why everything that gets published about XMRV gets great attention each time.



    Sam: One of the easiest ways to understand this retrovirus is AIDS, correct?



    Annette: That’s a good example, and the other one is HTLV1 – certainly looking at those viruses we can learn something, and we can learn how they integrate and so forth. . But this (XMRV/MRV's) is a brand new family (of human retroviruses). But there’s a lot to be learned, and before we make any clear statements we want to do the good hard research. I am very proud of our group, and the fact that they didn’t take their first results and simply go with those, but looked long and hard at this, and used 4 methods to be absolutely sure they knew what they found.



    Sam: Whenever there’s a discovery like this, and this is a huge discovery, there will always be a huge fight in the medical community when you have these kinds of changes.



    Judy: Absolutely. It is a huge discovery. And as I said, of potential public health high significance. So it will always be a level of understanding – we have to learn how to detect the virus. There is a lot to be learned. There will always be a lot of push-back. The best science generates more questions than answers, and that’s certainly what’s happened here.



    Continued at 11:08



    Sam: Your research is published in the past year that the reasons that other scientists have trouble recreating the results is that they are not doing the research in the same way. Why? That just seems to be illogical. Why are they not doing the research in the same way?



    Judy: Scientists usually do things that they do well, and the advances that we’ve had in the past decade, that is in molecular testing, high throughput, with an instrument to measure is it (the virus) there or not, have really replaced the old fashioned way of culturing. It’s very difficult to culture virus, do antibody testing which we’ve done, and it takes a lot of time and significant resources. It’s the hope and perhaps bias of other researchers that since we can detect HIV with these nucleic acid testing (fast throughput), we should be able to do so with XMRV. But it’s too early in the discovery process for XMRV. So we have to do the very labor intensive isolation of the virus from patients and it’s very difficult.



    Annette: I wanted to make another comment and I think it got glossed over in these last (contamination) papers. But really what you’re talking about is researchers at the NIH that have done this work, the Cleveland Clinic, the U of Utah, Cornell University, (the FDA), and WPI. So there are others that are very successful at this and are moving their research forward as well. So we’re lucky to have those significant groups of researchers working on this.



    Sam: What’s the role of politics in all of this



    Annette: Laughs… there is certainly a lot of politics in medicine. I think whenever there’s money, prestige, power, change, there’s going to be a lot of interest. Certainly in this case, there is a lot of money involved. Pharma, disability companies, insurance companies, government run health care systems. And they all have a stake in this. It’s going to create a massive change in the way things are done and the way these people are treated. And it’s going to cost. So the pushcback right now can be related to political issues.



    Sam: Blood supply around the world. People are giving blood, and they are not being tested for this (XMRV/MRV's).



    Judy: Blood donors are not being tested because we have not been able to develop the high throughput tests yet. We’ve been working with NHLBI and various Blood Working group that was set up the day our paper was published last year, and we had a very successful meeting (BP Advisory Council) last week, and it was voted on last week that there was enough concern and enough data to suggest that CFS patients NOT give blood.

    So until we can learn more, a question is asked, and if you have ever had CFS, you are not permitted to give blood. So in light of new discoveries we are erring on the side of caution and working very hard to develop those (high throughput) tests.



    Sam: People CAN get tested now for XMRV?



    Annette: Yes. The clinical lab is called VIPDx. Ours is a research lab at WPI, but the clinical WPI lab is getting ready to open but we’re not yet set up. But VIPDx is the current lab, and if a physician requests that test (for XMRV), they will get that test. Can go to VIPDx website to learn more.



    Judy: And we culture virus, and determine if the patient has an antibody to the virus, and that is the Gold Standard assay. Culture test can take 45 days, but we’re not in a hurry. The key is to get the answer right.



    Sam: How is the new institute?



    Annette: Very excited. We’re up and running. We’ve been working closely with physician this past week to set up medical practice. Meanwhile getting instrumentation up and running in research lab has taken some time. All going smoothly now. We’re very excited. Anyone that wants to come by can come by and see what’s happening there. We’re very very proud of it. We’re very excited to have all of the pieces in one home.



    Sam:

    I guess bottom line from this entire discussion today is for people not to panic. Things are still moving forward. Nothing has changed – it’s just that there are simply different opinions.



    Annette:

    Absolutely.



    Judy:

    As one would expect (that there would be different opinions). And this is really a great time of HOPE. Because we’ve also determined in our research this year - and that will be coming out published very soon - we’re understanding WHY the (XMRV) virus hurts the immune system. We’re understanding what’s going wrong to make you sick, and that’s another step to making people well. So it’s a great time of excitement and research around the world. We expect treatments next year (2011).



    Sam:

    2011. Can’t wait!



    Ends @ approx 17:30



    Yeah, can't wait for 2011! M.S.

    .
     
  3. lancelot

    lancelot Senior Member

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    Great to see them both responding so quickly. McClure keeps on digging her palatial hole! lol
     
  4. August59

    August59 Daughters High School Graduation

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    Hopefully we can replace Sam with Katie Couric soon!! (Nothing against Sam, the intent was exposure!)

    Thanks for the post!!
     
  5. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Couric would not be my first choice; I have no respect for her.

    Cynthia McFadden would be nice, though!
     
  6. caledonia

    caledonia

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    How about if we get Sam a gig on national network news - best of both worlds - lol.
     
  7. August59

    August59 Daughters High School Graduation

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    Couric was just the first name in my head. I don't watch any of them. Seems like all the news they want to cover is "Bad" news.
     
  8. August59

    August59 Daughters High School Graduation

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    That will work and he deserves it!!
     
  9. Cort

    Cort Phoenix Rising Founder

    Very nice interview - they both seemed very poised in the face of all this stuff.......Thanks for the transcript Shannah
     
  10. shannah

    shannah Senior Member

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    Yes Cort, both Annette and Judy were very poised, confident and even bold in places weren't they.

    Thanks to XMRV Global Action for the speedy transcript. Some thoughtful soul probably assumed we'd all love to see the last paragraph in print.

    "As one would expect (that there would be different opinions). And this is really a great time of HOPE. Because we’ve also determined in our research this year - and that will be coming out published very soon - we’re understanding WHY the (XMRV) virus hurts the immune system. We’re understanding what’s going wrong to make you sick, and that’s another step to making people well. So it’s a great time of excitement and research around the world. We expect treatments next year (2011)."

    Can't come soon enough!
     
  11. urbantravels

    urbantravels disjecta membra

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    I hope it's true that something is going to be published!
     
  12. free at last

    free at last Senior Member

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    They have already mentioned the troubles they are having getting papers published, so to say that a publication will be coming linking xmrv in someway as causative is a HUGE statement, with many many implications, how can contamination cause causative immune dysfunction for starters ? the potentiall for a bio marker, the potentiall for treatment. if a interaction of xmrv can be seen to be occurring with the immune system, then that really would nail the contamination issue, one would have thought,

    I suppose it depends on what they have discovered. I also think the fact that they say a publication will be coming soon, suggests that this new research is at least important enough for a journal to accept another publication from them.that does sound somewhat exciting, but all guess work im afraid, and i did make a decision with myself not to set myself up for dissapointment again, its hard to read between the lines, without somewhat setting ourselves up for more dissapointment though isnt it.

    Anyway its certainly something thats sound interesting we will have to see. I hope if treatments do surface, some can be found that are not highly toxic, as the cure has to be less worse than the symptoms, so for those whos condition is fairly stable ( like mine is ) one doesnt want liver kidney damage, toxic problems making a condition worse than it already is, of course for those severly ill, any treatment is hope, even the ones that are not toxic free, and i myself would likely have taken them the first few years of the onset of this illness, but now i dont really want to make my stable condition worse, thats just pointless,

    On the other hand, i do have a number of ongoing issues that might become more and more progressive as time goes on, ( it certainly feels like that ) with muscle problems, joint problems, pain in the back of my kneck that seems to worsen during sleep, that really does feel like somekind of progressive disease, the cancer risk maybe higher in those whos symptoms are less severe than the past. And the general fluey type feelings that i wake up with every day, seem to worsen during sleep, then dissipate as the morning progresses, and the intermitent symptoms that just seem to come and go like the wind, indicate to me, that im not free of this, and likely never will be.

    So a better place to be for sure than the awful past, but im worried the muscle and joint problems are going to increase in the next few years, leading to complete disability.

    So i may be stable, but far from cured. and at what level would i consider medication to slow down this slow disease?

    certainly not AZT or many of the others, unless i severly relapse again ? all so uncertain.

    i just hope less toxic drugs can be found that might halt any further disease progression,muscular, joint, immune, and finally the cancer risk.

    one wonders if those that are stable, may only have a choice of slowing disease progression in the long term, but at the cost of toxic effects causing damage that isnt even there presently,

    talk about catch 22, new treatments are needed for this, but im not sure they will be coming in my lifetime. The new drug recently posted about on here sounds interesting ( chimerix CMX157 ) But it takes forever for these new drugs to get approval, really at the moment theres just toxic drugs, not good.
    WPI sound confident and that is at least a little reasuring
     
  13. lancelot

    lancelot Senior Member

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    don't you find it strange that mikovitz can't get anything published after the initial 2009 science paper? why?
     
  14. Cort

    Cort Phoenix Rising Founder

    I'll bet it is....she talked about a December date a couple of months ago...I'll bet its just around the corner
     
  15. urbantravels

    urbantravels disjecta membra

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    Not a lot of December left, if so!
     
  16. shannah

    shannah Senior Member

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