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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. Koan

    Koan Be the change.

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    Hey! I read losta stuff that doesn't glow in the dark!

    :D

    ETA I really appreciate CBS's use of gentle, light colours which do actually increase ease of reading. Very tempting but I'm going to wait. nice job, indeed!
  2. _Kim_

    _Kim_ Guest

  3. anne_likes_red

    anne_likes_red Senior Member

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    Such great work - such generous souls.

    I really am in awe of this community. Thank you ALL so much...and that includes supportive partners, and it most certainly includes Cort. ...The presentation looks excellent.
  4. fds66

    fds66 Senior Member

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    Yes, segment 9 is the first one I did and you had already put it up on your website the other day.

    My post
    Title Testing for XMRV
    Q&A Antibodies

    Numbers 5 and 12 are not posted yet. According to the main page they had trouble uploading them and will post when they can.

    http://cfsknowledgecenter.ning.com/

    So we have all the existing segments transcribed now.

    When segments 5 and 12 are up there will be just two more sections to do.
  5. fds66

    fds66 Senior Member

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    Cort, the sections are a little mixed up. I am just writing a message to help you sort them out.
  6. fds66

    fds66 Senior Member

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    Cort, I've just looked at your second page and you are a little mixed up there.

    http://aboutmecfs.org/Rsrch/XMRVKlimasII.aspx

    OK, the section at the top that you have labelled section 7 is actually section 9 and is correctly assigned as mine.

    The missing real section 7 is ComeBackShane's and is here

    At the bottom you have section 10 and 11 but I transcribed the last section, section 11 and you have it assigned to Koan. You need to split sections 10 and 11, Koan did section 10, I did section 11. They are shorted sections than the previous ones.



    My summary

    Segments:
    1. Intro, Overlapping Conditions, Viruses (Blackbird)
    2. Viruses &CFS/ME, WPI & XMRV (CFS since 1998 and Koan)
    3. XMRV, NK cells, Latent & Retro Viruses (Kim)
    4. Retroviruses, Biomarker (Kim)
    5. Antibodies, What we don’t know, Cancer (not posted yet)
    6. Virus Life Cycle, Immune Modulation Drugs (Kim)
    7. What’s next in Research (ComeBackShane)
    8. Research funding and advocacy (ComeBackShane)
    9. Testing for XMRV, Q&A : Antibodies (fds66)
    10. Q&A: Drug timeline, U of M Clinic & studies (Koan)
    11. Q&A: Morton Fund, taking care of yourself (fds66)
    12. Miami CFS Clinic (notposted yet)

    I've just looked at the first page and that looks fine. All that is missing is section 5 which has not been posted up yet.
  7. starryeyes

    starryeyes Senior Member

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    Thank you all for transcribing Nancy Klimas's lecture. :) Awesome job!
  8. _Kim_

    _Kim_ Guest

    Thanks fds66. I noticed that last night before going to bed and didn't have the brain where-with-all to organize the details like you did so clearly.

    And Cort, the layout is nice. I particularly like the boxed quotes you chose to sit alongside the text. Looking good.
  9. fds66

    fds66 Senior Member

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  10. gracenote

    gracenote All shall be well . . .

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    now on-line

    Just got this message.

  11. _Kim_

    _Kim_ Guest

    Excellent! Can't wait to see the bits that I missed.

    And that also means that we need two new volunteers to transcribe these sections.

    ComeBackShane - do not even think about it. You're already over your quota.
  12. garcia

    garcia Aristocrat Extraordinaire

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    What they heck. In for a penny ...

    I'll take a bite at number 5.
  13. _Kim_

    _Kim_ Guest

    Wooohooo!! garcia - you are the one that started this transcription craze. Thanks.

    We need one more volunteer to transcribe section 12
  14. CBS

    CBS Senior Member

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    Thanks Kim

    I have to admit that I did think about it and that was where it ended. I'm toast! This tank is empty - but thanks for looking after me (especially while my wife's off at work!).

    Shane
  15. Lily

    Lily *Believe*

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    Deep breath.......

    OK - I would love to help, so I will give it a whirl.........please be patient - I doubt I'll be as swift as the others but would like to give it a try!


    Fingers crossed -

    Linda
  16. _Kim_

    _Kim_ Guest

    Just so there are no more squashed toes (Koan) -

    garcia is taking on section 5 and loldershaw is taking on section 12

    Thanks everyone.
  17. garcia

    garcia Aristocrat Extraordinaire

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    Number 5 is alive!

    Section 5 – Antibodies, What we don’t know, Cancer

    Antibodies

    [Question from audience, inaudible]

    Oh that’s a really good question. She asked: "If there’s antibodies why don’t the antibodies kill it?" That’s a very good question and one that dogs the vaccine-development people in HIV all these years. The reason we don’t have an HIV vaccine yet is that antibodies don’t kill HIV, you need cytotoxic T-cells to kill HIV. So all those vaccines for HIV have been trying to get the cytotoxic T-cell lines all geared up and ready to go and not focus on the antibodies. The antibodies don’t do it. Whereas for other viruses the antibodies are great for it. I mean all those childhood vaccines you got were just trying to build antibodies for all those years. So there are some viruses that just the human body doesn’t make a killing, lethal antibody to attach to that virus. So we don’t know this virus well enough. I don’t know, there might be an antibody that kills this virus. It’s only been a few years. They haven’t had a chance to look very hard. The other thing disturbing on that other one was only half the people they looked at had antibodies, but they had the virus. So antibodies are probably not going to be our world’s best blood-test for this.

    Judy Mikovits renamed the illness, I’m not sure this is going to stick, but she called it XAND. XMRV Associated Neuroimmune Diseases. The reason why I don’t think it’s going to stick is I don’t think the “M” is going to stick very long. I think as soon as this virus is clearly shown to be a human virus, they are not going to call it a mouse virus any more, and they’re going to rename this virus, and then we’ll be renaming again. So I’m not leaping to embrace the new name, but I will embrace any name that’s not Chronic Fatigue Syndrome! [Applause]

    [​IMG]

    Slide: XMRV Associated Neuroimmune Diseases (XAND)
    Potential Candidates:

    • Atypical MS: 3/3 positive for XMRV ENV protein and gag DNA

    • Fibromyalgia: 12/20 (60%) positive for XMRV gag DNA

    • Autism: 6/15 (40%) positive for XMRV gag DNA
    4/7 (57%) positive for serum antibody to XMRV Env

    • Gulf War Illness: Not tested

    Samples were taken from family members of XMRV positive CFS
    subjects with these neuroimmune diseases.


    This is also stuff they showed just last week, and this is not published data. And these are not going to be very representative because these are family members of CFS patients, who happen to have MS, fibromyalgia, autism. And in family members of CFS patients who had these other conditions they found XMRV in that family member. So there are lots of questions. This is the first paper. The paper is very exciting. The next step is to validate the paper. The very next step. And this is going to be difficult because what did I tell you about the prostate work? Two of them said yes, and two of them said no. Now if you talk to the guys who said yes, they’ll say the guys that said no didn’t use the same method to look. That’s science! We do this all the time. We get into big quibbles over method. Method, method, method!

    Already I have a conference call with the CDC on Monday because they want their samples. The guy at NYU wants their samples. The guy at Hopkins wants their samples. I mean everybody knows that I have a freezer full of samples and my reaction is: Oh my God, what method would you apply? I don’t want to be the one that had the bad method. I don’t want my name on the paper that didn’t use the right tool! So, the first step I think is to get all the people trying to do this together and use the same method. And that’s absolutely necessary. And if you see some negative papers coming out, don’t be discouraged. It’s going to happen. There are going to be some negative papers. People really jump to do this. And the method is not that easy, and getting the right bits and pieces you need together, it’s not: read the paper and then go do it.

    Things we don’t know.

    What cell types are infected? We know for sure that NK-cells are and other white blood cells are. We know that there is some neurotropism [affinity for nervous tissue] from this virus from the mouse studies. But we don’t know every kind of cell type that could be infected and what’s infected in humans.

    How is it transmitted? A critical question. Certainly the blood bank industry has jumped right in and are going to try to see if this is a worry there because they have freezers full of samples they can go back and survey for any positive, and then actually have recipients, and they can see if there are any recipients that are positive. So they’ll be able to test that theory I think very quickly and very efficiently.

    What is the immune response that controls this virus? You asked that question: would antibodies do it? And the answer is (that's a great question) the antibodies might do it. Cells might do it. It might be that we have to repair these cells and then they can do it. But those are good questions. We don’t know with this virus what the answer is. But we do have a much better sense of what retroviruses are after the last 20 years of HIV work. We really do. I mean I go to the HIV meetings and I go to the CFS meetings. Let me tell you the difference. Reno, and this is a pretty big meeting last year, I think they had 100 and maybe 200 investigators, and that was the whole world, the Japanese were there, the Europeans were there and pretty much it’s a who’s who of who does this work and there was 200 of us. And the HIV meetings, I’ve been to meetings where 18,000 people came [gasps from audience]. And that’s the kind of brain power that was being directed.

    Now the other thing about the HIV guys is that they are kind of bored, don’t have anything to do, patients are doing well, [laughter] science is a little dry, not a lot of grants. Cool! We’re going to suck some of those guys right into our field now. This is going to be really, really good. We’ve been waiting for a flush of brilliant new people, and I think we are going to see a flush of brilliant new people come into our field if this holds up, there’s going to be a lot of good interest.

    Cancer

    Does this virus alter the risk for cancer? Now it’s a question that has been left unanswered to you and every single one of my patients has asked me this question. Do I have an increased risk of cancer? My gut reaction is yes probably, because the cells that are your cancer-prevention cells are part of what’s broken or partially broken in this illness. So you always hear me talking about anything you can do, [e.g.] antioxidants, to try to help you any way you can to boost up your own tumor-defense systems. And these cells in particular. But here we are 25 years into this illness and we do not to date have a natural history study that is longer than 3 years. No one has yet answered for you the question that needs to be answered. Part of my motivation to put together these clinics with Hannah, these Chronic Fatigue clinics, is that we were going to use this big common database and if we really can get a bunch of clinics all linked up together using the same database we’re going to have a natural history study finally. Because you have to do it yourself. That’s how it works in this field. We actually don’t have that information for you.

    Can we develop Immune-based therapies? I and [Dr] Mikovits have been working on immune-based therapies for years. We did a really cool one years ago with cell extension. Some of you were in that study and some of you got really big impressive results when we enhanced your cytotoxic T-cells and your natural killer cells. You got good clinical improvement.
  18. Lily

    Lily *Believe*

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    Dr. Klimas - Segment 12 Q & A

    Segment 12 Q&A
    The New Miami CFS and Recovery Clinic
    Age and Recovery time


    Dr. Klimas: This is Hannah Olanoff. Hannah moved here from Washington because she heard me talk about Chronic Fatigue Syndrome so much, and she got caught up in this with me, and I think I got her totally in this thing, and so she turned her life upside down so she could come down here and we could hopefully start a clinic.

    And hopefully model this clinic in a way so that it could be transplanted. That it is a teaching tool for clinicians so they can go through the various aspects: the sleep, the endocrine, the immune and the viral, and so on – and go through each individual part of what needs to be done in the evaluation and treatment process.

    So that’s very exciting and it’s also hopefully under one roof. The diagnostics we need - except for the lab – so that when you’ve been sent, for example, to a cardiologist, for say a tilt-table test, and then have him say, “I don’t believe in Chronic Fatigue Syndrome” – and that’s so discouraging. So we are trying to make this a compassionate place where we can do the guts of the work-up and diagnostics under one roof, with the people that are well-trained and compassionate and believe that this is a real entity and really work with you to be on your team.

    Hannah Olanoff: Out on the table out there, there are some flyers - the most important thing on the flyer is the email address: info@CFSclinic.com. OK? We are going to get the clinic open in December. I understand my life depends on it – (laughter), um..and just as soon as I know when we can begin taking appointments, I’ll get an email out to P.A.N.D.O.R.A and CFSknowledge, but most importantly to the email list I have at info@CFSclinic.com. This will be a cash-pay clinic. We will give you a bill that will be submitable to your insurance provider.

    Dr. Klimas: Initially, when we set this clinic up – I know that some of you can’t afford it, that’s why we’re working so hard to make the University of Miami grow and be able to continue to do the insurance-based, the Medicare and Medicaid, and all the rest.

    All right. I’ll be the training doctor and the consultant, and in fact the medical director, to be able to make sure it’s done right. I’ll be the one developing the templates. Now these templates are very exciting, and I’m hoping to see them used more broadly.

    Please don’t think I’m leaving the University of Miami clinic. Let me underscore that – PLEASE DON’T THINK I’M LEAVING THE UNIVERSITY OF MIAMI CLINIC – so, ah, we’re going to pull this off one way or another. I’m just excited to finally be getting going because of these hundreds of people on the wait list that simply can’t find a doctor and there’s no doctor in town.

    Now to be encouraged – if this thing really is a virus, every Infectious Disease specialist is going to know that part of it.

    (Dr. Klimas repeating a question from the audience) She asked specifically, that even though you’ve been sick for 30 years, is your prognosis or treatment with an anti-viral going to be different than someone who’s been sick for a year – and my answer is don’t be discouraged by that. OK - just don’t be! There is something about being older…um… that the immune system just doesn’t reconstitute as quickly. Younger people – not so much duration – younger people are going to do better than older people, but the older people are gonna do well too, if we can project from our HIV experience.

    I have to let a Vet get the last word – so you get the last question; OK last question:

    Gentleman from the audience: It’s not a question, it’s just a statement. I want to thank you for the work you’re doing for the Veterans and the VA Hospital. As one of your patients, I just saw you last week and you gave me hope when I’d given up completely on other things, and I appreciate that and want to thank you on behalf of the Veterans. THANK YOU VERY MUCH.

    Dr. Klimas: Well, your’e very welcome.

    (APPLAUSE)
  19. dannybex

    dannybex Senior Member

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    Does anyone know what 'cell-extension' immune-based therapies Klimas is referring to?

    Thanks in advance,

    Dan

    p.s. thanks Garcia and all...
  20. garcia

    garcia Aristocrat Extraordinaire

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    I think the study Klimas is referring to is:
    Clinical and Immunologic Effects of Autologous Lymph Node Cell Transplant in Chronic Fatigue Syndrome. Klimas et al, Journal of Chronic Fatigue Syndrome, Vol 8(1) 2001.

    There is a related review article from the same journal: Immunotherapy in Chronic Fatigue Syndrome: Therapeutic Interventions Aimed at Modulating the Th1/Th2 Cytokine Expression Balance. Montero, Klimas & Fletcher, Journal of Chronic Fatigue Syndrome, Vol 8(1), 2001.

    garcia.

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