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August 8th - What is the one thing about suffering with severe ME that the world needs to know?
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First Public Presentation by WPI Researchers

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Cort, Oct 17, 2009.

  1. Koan

    Koan Be the change.

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    I am too!!!
     
  2. Kati

    Kati Patient in training

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    Levi, can you please talk a bit more about that? Did you mean in poorer condition?

    Did they talk about what's coming up for them?

    Thanks for the fresh update- looking forward to hear more.

    Kati
     
  3. Koan

    Koan Be the change.

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    Thank you sooo much, Levi!

    Fantastic news that she is a force!

    Rest up!!!

    Koan
     
  4. Robin

    Robin Guest

    You must be exhausted! Thanks so much for the update!

    HIV is in saliva too (and tears and breastmilk) but it such a tiny quantity that it's almost impossible to transmit that way. I wonder what the concentration of XMRV is in saliva? So many questions...
     
  5. Koan

    Koan Be the change.

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    I find it refreshing that nothing is being soft pedaled.

    Yeah, mention of cancer risk and Pick's disease is frightening but we have the benefit of finding out about potential links and potential treatments in one fell swoop.

    Knowledge is power.

    Even knowing just this much inspires me to do what I know is helpful - pace, meditate, avoid or deal effectively with stress. The stakes may be higher than I knew.

    It is also good to remember that there are some who have been dealing with this for a very long time (30 years since onset for me) and if I could stop my cognitive problems now, I'd be very happy indeed. No need to leap to worst case scenario.

    On the other hand, this no nonsense approach may insure that we get appropriately aggressive and timely treatment. That's a good thing.

    I want to know.

    Again, Levi, thank you very much!

    Peace out,
    Koan
     
  6. Rrrr

    Rrrr Senior Member

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    UOP and VO2??

    you wrote:
    In the future, it looks like UOP will be collaborating with VO2 studies in CFS patients.

    question: what is UOP and VO2?

    thanks for this summary of the talk! i hope we can watch it tomorrow on YouTube, anyone know?

    rrrr
     
  7. shrewsbury

    shrewsbury member

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    Levi
    You must be drained. THanks so much for getting this much out to us tonight! Great to hear your good impression of Mikovits. I find myself craving data. I will be patient.
    islandfinn
     
  8. srmny

    srmny

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    Levi,

    Thank you so much for making the trip and reporting back to us so promptly. I know that you are exhausted from it. We are all very grateful to you.

    srmny
     
  9. Marylib

    Marylib Senior Member

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    Thank you Levi. Hope you get some rest.
     
  10. dannybex

    dannybex Senior Member

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    Thanks so much Levi -- that was very kind of you to post after such a long and probably very (extra) exhausting day!

    I too wonder about that last comment however, as the HIV virus is found in saliva -- she must know that -- but is not transmitted that way.

    Also interesting to learn that the German research was faulty.

    Thanks Levi,

    Dan
     
  11. zoe.a.m.

    zoe.a.m. Senior Member

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    Just wanted to add my Thank you--it's wonderful to hear new news and info that hasn't made it to newspapers or TV (and might not). How fortunate for us that you were able to attend! Take care!
     
  12. Finch

    Finch Down With the Sickness

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    Thank you Levi!

    Levi - It's so good of you to try to give us this information when you're so wiped out! I certainly appreciate it, and it's very helpful to all of us who are waiting to know what the next steps are going to be.

    We're an awfully impatient lot, but we have good reason to be, I know.

    I hope you're getting some good rest. The stimulation alone must be overwhelming!

    Guys - the CFSAC meeting is only two days away! I hope Cort gets his wish and that lots of people are there.
     
  13. Advocate

    Advocate Senior Member

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    UOP is University of the Pacific, which is where Judy Mikovits spoke.

    The university has a Fatigue Lab there that measures the volume of oxygen (VO2) you can consume while exercising at your maximum capacity. The Fatigue Lab does this two days in a row, and they have found that people with CFS consume less oxygen on the second day. Cort did a great blog on this, and on Staci Stevens, the director of the lab.
     
  14. Rrrr

    Rrrr Senior Member

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    thank you

    thanks for help defining uop and vo2!
     
  15. mezombie

    mezombie Senior Member

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    Many thanks, Levi!

    I know how exhausting it is to attend these types of things, let alone report on them. It's very kind of you to do so.:)

    I was particularly interested in this part:


    I'm glad Mikovitz is so on top of things like this. She will need to be as Reeves and others gunning for her will no doubt use crappy tests, incomparable research subjects, and the like to try to discredit her work.
     
  16. Djembe

    Djembe Guest

    any idea when the info from this talk is going to be available, maybe a transcript of what Judy talked about or a video ? Would be interesting to hear more about the research that was done and the implications it has for people suffering from ME/XAND
     
  17. dannybex

    dannybex Senior Member

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    That's for sure!

    Followup question: Did she say if the controls in the outbreak areas had higher levels of XMRV (higher than the average 3.7%)?

    Also, did she say anything about the environments where these outbreaks took place, i.e., possible mold, pesticide, chemical exposure issues that may be involved?

    Thanks Levi,

    d.

    p.s You do realize that you'll probably become a 'Senior Member' in the next day or two from all the questions you'll get? :)
     
  18. dannybex

    dannybex Senior Member

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    Thanks Levi...

    Hopefully they'll post a video of it in the next couple of days, maybe on YouTube? It would be really interesting to learn about the XMRV levels in the 'healthy' folks in the outbreak areas.

    Thanks so much,

    d.
     
  19. Cort

    Cort Phoenix Rising Founder

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    It sounds like outbreaks really could make a difference. The NCI will be looking very closely at these controls. They're obviously very important to knowing the overall spread of the virus in the population (which is why researchers have called for more information on just to those controls were).

    If they're close contacts then they could overstate the prevalence of the virus. But if they're all from 'non outbreak' areas then you have a truer sense of overall prevalence.

    Non Outbreaks - But what about people who are not in 'outbreak' areas. I assume that most of us were not. ME/CFS is everywhere or is it? Now I'm wondering again if she's talking about a certain subset of patients. Is this the outbreak ME/CFS or the endemic ME/CFS? Maybe its both - maybe certain conditions (another virus?) increase the infectivity of XMRV - causing an outbreak. If they're not there you get a very slow spread.

    That Reeves said the virus was 'ubiquitous' sticks in my mind. Maybe he was misquoted but if he wasn't he's not an idiot - no one who works for the CDC - a highly acclaimed place to be - is an idiot. If he said that he has some reason for saying that. What does he mean by that? What a weird statement . What was that all about? us

    Endoretrovirus - Then there is the endoretrovirus angle; is this a retrovirus that's been embedded in our genome for millennia that has escaped and is replicating in our cells? Andrew Lloyd wondered about this and someone from the WPI emphatically said No! but then Joey reported that Dr. Peterson didn't close the door on that possibility.
     
  20. acer2000

    acer2000 Senior Member

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    Interesting considering I got sick when I was living near DC. Maybe I don't have XMRV... I guess I'll find out soon enough.
     

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