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Dr Klimas Recent Lecture ME Awareness Day (+ve XMRV paper coming)

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by shannah, May 20, 2010.

  1. shannah

    shannah Senior Member

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  2. VillageLife

    VillageLife Senior Member

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    wow the research there doing is amazing !!
    I think the days of the unknown of this illness, are finally coming to an end..................
    For some it might be xmrv, for some it might be genes and I think they might nail them all.
  3. Knackered

    Knackered Guest

    One positive study coming! Woohoo!
  4. dsdmom

    dsdmom Senior Member

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    Knackered - Dr. Klimas told me this Monday morning as well. But then the German study came out - so maybe that is the one she was referring to?
  5. Knackered

    Knackered Guest

    The German study wasn't a replication so hopefully that wasn't the one she was reffering to. She says it's a confirming study, as in confirming the WPI's original study.

    Hopefully I'm not wrong.
  6. dsdmom

    dsdmom Senior Member

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    I hope you're right too! I should have asked where the study was done, etc...
  7. gracenote

    gracenote All shall be well . . .

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    It sounded to me like she was talking about XMRV studies and ME/CFS (not just XMRV).

    Loved her presentation. She talks fast and I think I missed a lot.
  8. shrewsbury

    shrewsbury member

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    I think knackered could be right. I think Nancy was discussing xmrv updates (not cfs specific yet) and said something like 3 negative papers, well really 2 negative and one mixed bag, have come out so far, not to be worried about, didn't use all 4 types of testing, and one positive and one negative paper to come soon. She's planning on using all 4 types of testing + looking at active and latent xmrv.
  9. Otis

    Otis Señor Mumbler

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    Bumping the thread.
  10. shrewsbury

    shrewsbury member

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    http://cfsknowledgecenter.com/expert-assistance.php

    This is nowhere near a transcription, but does have a few of the key points I caught, and, if you’re lucky, the slides. I apologize for any errors.

    To me - this video is the best thing since the original science paper

    XMRV Update

    1:36 The NIH 2 weeks ago released true positive and negative samples that all can use

    The science not established yet, but on its way.

    In December, she sent 3 sets of the same GWI and ME/CFS samples to 3 different labs. 2 labs had different results for both, and the 3rd the same for GWI and different for ME/CFS

    4:02 Only the first xmrv paper did all 4 types of testing

    She’s setting up to look for it all 4 ways + look for active and latent virus

    5:48 Pharma is interested, involved and sniffing around all the big labs looking for partnerships. The in vitro tests have been done. They now know which drugs will be good trial drugs. Expect clinical trials next 5-6 months

    6:25 xmrv has energized the field. Applications and funding for grants are both up.

    Rapid-response research is necessary as grant process takes minimum 1 – 1 years.

    Grassroots funding has developed to make this happen.

    Clinical Approaches

    8:16 ME/CFS is interactive. The compromised immune system leads to problems with the autonomic systems and the neuroendocrine system. And they all affect each other. Are looking at that.

    One of her studies did mild exercise + measure relapse at 3 points in time. For GWI they had better funding so could measure 8 points. Are getting funding to do the same for ME/CFS next month.

    Advances

    11:06 60% of people with ME/CFS get sleep apnea. Some from ME/CFS weight gain; some not

    13:10 some supplements modestly helpful, well tolerated. She feels worth doing as any little bit more energy/lessen symptoms helps

    She uses ubiquinol (active coQ10) with everyone

    16:10 Linda Watkins doing neat work on pain (FM overlay side). Poor sleep and pain lead to more of the other. Looking at norepenephrin > neuron > 2 IL1s 9white blood cells beside it also signal pain. Opens doors to new treatments in brain inflammation. Doing cool animal work. Already done Phase 1 & 2 trials.

    Normally with stress, cortisol kicks in. For us, it shuts off.

    Most of us have about 1 litre of blood missing (+explains how tests normally do ratios so can miss this)

    26:00 to volunteer for research Zbarnes@med.miami.edu
  11. shrewsbury

    shrewsbury member

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    I am having trouble with getting the slides here. Hopefully these are the first 4 of 12 slides.

    ETA They aren't. AH well - will try to get all 12 up. The names I gave them (numbered and with descriptors) aren't coming up.

    Attached Files:

  12. shrewsbury

    shrewsbury member

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    Hopefully the remaining 8.

    Attached Files:

  13. gracenote

    gracenote All shall be well . . .

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    Thank you so much shrewsbury. I tried to print out the slides but I could only get a corner of them.

    Is there a way to enlarge the thumbnails even more when I select them?

    Very exciting. Nancy's excited, so I'm excited.
  14. shrewsbury

    shrewsbury member

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    Here's the order the slides are supposed to be in:

    Slide order
    1. :42 News of 2010 XMRV
    2. 1:35 News of 2010 XMRV
    3. 6:31 Energizing a Field
    4. 8:17 Another Approach
    5. 11:07 Clinical Advances
    6. 13:41 Clinical Advances Immune Approaches
    7. 16:11 Clinical Advances Infection
    8. 17:23 Clinical Advances Autonomic Function
    9. 18:22 Clinical Advances Neuroendocrine
    10. 20:45 Sleep Disorders
    11. 21:18 Pain
    12. 25:41 Collaborators
  15. shrewsbury

    shrewsbury member

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    My pleasure graqcenote. It is exciting! And reassuring to me.

    I'm not good on the tech side of attachments / photos here. It was a small miracle that I achieved this much. Otis and Kim, that I know of, are very knowledgable. When I click on the thumbnails (firefox on a PC) they come up large enough to read - if that helps any????
  16. OurDayWillCome

    OurDayWillCome

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    Interesting bit about Cortisol. So the first line of defense against stress does not work as it should, just as the NK cells do not function in the Immune system as they should. A bit like trying to fight a war when the first line of defense is bombers, and they are all out of commission!
  17. rebecca1995

    rebecca1995 Apple, anyone?

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    Wow, shrewsie, thanks for the notes!

    I wonder if she was referring to the four drugs found effective in Singh's study--AZT, Raltegravir, tenofovir and the L one--or if Pharma has already developed new drugs? I hope they do invent new ones eventually 'cause the four existing ones all seem to have problems of one kind or another.
  18. SeaShel

    SeaShel Senior Member

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    Can someone tell me what dosage of ubiquinol Dr. Klimas recommends?

    Thanks!

    Shelley
  19. Sasha

    Sasha Fine, thank you

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    I'm really grateful to you for the summary, Shrewsbury - the sound quality for me was bad and I could tell it was good stuff but could hardly hear it. It's really exciting - I agree that this update is the most exciting news since publication of the original Science paper.

    I don't have the science background to follow the controversy over the original and subsequent negative studies but the news of a positive study and the progress on benchmark samples and all the rest of it sound great. I've been sitting on the fence about XMRV's link to CFS (just because of my inability to understand the science of it, not an informed position) but now I've fallen off it and am on the hopeful side.

    Nancy Klimas's opinion also counts heavily with me - she obviously cares deeply about ME/CFS but wasn't involved in any of the published work on XMRV so far so I see her as a dispassionate observer on that.
  20. parvofighter

    parvofighter Senior Member

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    Klimas rocks!

    Great news from Dr Klimas!
    Thanks so much Shannah and Shrewsbury for your great info and uploads. For any of you needing a shot in the arm of some positivity, I highly recommend you listen to Klimas's 25 minute presentation here: http://cfsknowledgecenter.com/expert-assistance.php

    Quotable Quotes from Klimas' talk
    I took a few more notes, particularly on the juicy parts:

    At ~1:05: Referring to 3 (lousy) negative papers; 1 confirming paper just about to come out; and another negative paper:
    "And what it underscores is when something new comes out and everyone jumps in with different methods, they all see different things. So we really dont know the answer on XMRV yet. I would NOT (her emphasis) be discouraged by the 3 negative papers. They came out before any of the validation, methodology was determined and agreed upon."
    At ~3:55: On testing methods of the competing XMRV teams:
    " The other thing about the XMRV studies. The only person to study XMRV 4 ways is that first paper. Every other paper only looked 1 way, or possibly 2."
    At ~5:34 On pharma involvement and anticipated (XMRV, antiretroviral) clinical trials:
    One of the more promising things for all of you is the Pharma companies did jump in with both feet. Have done all in vitro studies that need to be done to determine which of current antiretrovirals are likely to be effective. All that brilliant in vitro work has been done and they know which drugs would make good study drugs. And theyre interested. And theyre sniffing around clinics like ours looking for partners.Hopefully clinical trials in the next 5-6 months.
    At ~14:00 On Clinical Advances: Neutroceuticals. NB: Klimas emphasized she supports neutroceuticals because they are so well tolerated. They aren't the "big guns", but they do offer modest improvement. Regarding Coenzyme Q10; Ubiquinol (see ProHealth):
    "Your cells are over-activated, under a lot of stress. Make a lot of free radicals. Free radicals are bad because they tear up the cell, but they also being in the DNA are thought to be the cause of some cancers. So Im very keen on making sure everyones on protection (14:47) and I use ubiquinol or CoQ10 because the Japanese did such a beautiful study on its effect inside the cell in the fatigued population. So I use 60 ubiquinol 2x/day or 200 CoQ10 2x/day look that up and it helps in the long term protect you from things that might happen(cancer), but in the short term its also somewhat anti-fatiguing."

    Note: I recommend you cue in to the video to confirm the dosages she mentioned- the sound was muffled, and I wouldn't want you to follow the above dosages without confirming with the figs above, and with your own physician. Also, CoQ and Ubiquinol weren't the only neutroceuticals she mentioned - just the only ones she gave dosages for.
    RAPID RESPONSE FUNDING: CAN YOU HELP?
    Finally:
    The other really exciting thing I took away is that people with deeper pockets (than unemployed, housebound/bedbound ME/CFS patients) are stepping up to the plate with some serious dollars. But any and all donations are welcomed. Klimas talked about "Rapid Response" funding... usually the cycle of funding for research can be over a year. But with private donations, they have been able to fast-track funding and hit the ground jogging, if not running.... This is just great news. But they need more!

    SO IF YOU HAVE ME/CFS. OR A LOVED ONE HAS ME/CFS.
    AND ESPECIALLY IF YOU ARE RICH. OR IF YOU HAVE HIGH-UP CONNECTIONS WITH BIG PHARMA
    :Retro smile::Retro smile::Retro smile::Retro smile::Retro smile:
    PLEASE DONATE TO AND/OR ENCOURAGE PHARMA TO SUPPORT THESE EMINENT RESEARCHERS!
    PERSONALLY, I'D RECOMMEND WPI AND KLIMAS/U OF MIAMI

    WPI's Paypal Link for direct donations: http://www.wpinstitute.org/help/help_donation.html
    Or contact: mike.hillerby@wpinstitute.org

    Donate to Dr Klimas' work: www.med.miami.edu/give in "other" add Morton Fund or CFS Research;
    Or contact: egoldberg@med.miami.edu

    :victory:THANK YOU DR KLIMAS:victory:

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