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

  1. urbantravels

    urbantravels disjecta membra

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  2. serenity

    serenity Senior Member

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    Jemal, i would love to get the news out - if anyone can tell me what the news is? haaha! ok it's been a hectic day for me & i'm trying to keep up but i have a foggy brain on the best of days & i'm no scientist. someone tell me what to tell people? can anyone boil all this down to something i can understand & relate to people like me who dont' know anything about anything?
    thanks
     
  3. Jemal

    Jemal Senior Member

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    Heh... nothing to see here, move along please :D

    From the looks of it, this is turning into some pretty big news though. Already some mayor papers/websites covering the news, awareness is always good.
     
  4. filfla4

    filfla4 Senior Member

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  5. Jemal

    Jemal Senior Member

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    Well, I approached a few mayor sites that had some earlier articles about XMRV. Then I provided them with links to the PNAS paper and some of the new articles on the websites of mayor American newspapers. That's it, let the journalists do the rest of the work, they get paid for it :)

    I have read all the articles so far and seen the reactions made by the WPI. This paper does confirm the earlier WPI results. It's a family of one particular retrovirus though, just like there's multiple versions of HIV going around (apparently... didn't know that until I read articles about it today).
     
  6. serenity

    serenity Senior Member

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    sorry Jemal, still way over most people's heads. i'm trying to figure out what to tell friends & family. that means Jo Blow on the street who knows not a thing about the whole thing. i dunno what i'm supposed to say to anyone yet, so i guess i will just wait a bit.
    (thanks for trying, i think it's just still too complex for me to have anything to tell anyone.)
     
  7. urbantravels

    urbantravels disjecta membra

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    Wow, that Reuters story didn't even UTTER the word "retrovirus." Just a virus! No big deal! Nothing to see here!

    Nobody get the idea that there is a retrovirus loose in the general population and blood supply and that action is called for!
     
  8. filfla4

    filfla4 Senior Member

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    Very sad as this is what many European papers will pick up! :(
     
  9. urbantravels

    urbantravels disjecta membra

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    Just a "mouse virus." That doesn't sound so scary, now does it??:eek:
     
  10. Daisymay

    Daisymay Senior Member

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    http://chronicfatigue.about.com/b/2...rms-xmrv-tied-to-chronic-fatigue-syndrome.htm

    NIH/FDA Study Confirms: XMRV Tied to Chronic Fatigue Syndrome
    Monday August 23, 2010

    BREAKING NEWS: The much-anticipated FDA/NIH study on XMRV and chronic fatigue syndrome (ME/CFS) is out, and it not only confirms the original findings tying the retrovirus to a large number of cases, it identified a host of infectious agents in the same family, called MLV-related viruses. However, it also identified a more diverse selection of viruses than the original study, published last year in the journal Science.

    News of this studies findings leaked out early this summer, but then the paper was held for publication because a similar study from the CDC had conflicting results. The CDC study came out a short time later. It found no evidence of XMRV in ME/CFS or in healthy controls, leading many to conclude that its detection methods were inadequate.

    Study Results

    FDA and NIH researchers found evidence of XMRV in 32 out of 37 blood samples collected in the 1990s from people with ME/CFS, which comes out to 86.5 percent. In the control group, they found the retrovirus in 3 of 44 participants, or 6.8 percent. In fresh blood samples from 8 ME/CFS patients, they found XMRV in 7.

    In the original research linked XMRV to ME/CFS, Whittemore Peterson Institute researchers found only one type of virus. This new paper, however, says researchers identified a diverse group of related viruses.

    What Does MLV-Related Mean?

    MLV means "murine-leukemia virus," which is one of the 3 identified human retroviruses. The M in XMRV stands for the same thing, and the R stands for "related." MLV-related viruses all belong to the same family of retroviruses. This new finding of a diverse virus population is more consistent with what we know of retroviruses -- that they tend to mutate frequently, which makes them harder to eradicate.

    Going Forward

    As research moves forward, expect to see a lot of drug makers testing their HIV drugs against XMRV and other MLV-related viruses. The drug trials we've seen so far have had positive results, which is good news. However, these anti-retroviral drugs can be extremely hard to tolerate, and people with ME/CFS are often less able to tolerate drugs than other people.

    Don't expect doctors to start doling out these drugs, though. This study helps prove that this virus is in a lot of sick people, but we still don't know if it's what's making them sick. It's possible that it's a harmless virus that takes advantage of an immune system already weakened by something else. The next step for researchers is to determine what, if any, impact these viruses have on the human body.
     
  11. Mark

    Mark Acting CEO

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    OMG that Reuters release is absolutely sick!

    Every single sentence is a piece of spin downplaying the news. And urbantravels is quite right, that is what we will see verbatim in the papers tomorrow.

    Still, it's helpful to be reminded that everything we read in the papers is a pack of goddamn lies - we needn't feel singled out about that.
     
  12. Frank

    Frank Senior Member

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    damn this Reuters message will be picked up by many papers here. Can someone ask them to edit, maybe with the Nytimes and Washington post articles by hand.
    I've sent my own version to the belgian news papers.
     
  13. Jemal

    Jemal Senior Member

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    Hehe.

    A lot of questions still need to be answered. But to me it looks like there's a retrovirus doing it's dirty business for at least a few decades. It could take years before someone with the virus is going to display symptoms. With potentially so many healthy people already infected, it could be a ticking time bomb.

    I am fantasising a bit now:
    Here in the Netherlands the Swine Flu virus (H1N1 influenza or whatever it's called) was pretty big news, but in the end it turned out to be relatively harmless (I know people have died of it, and that's horrible, but it was not the Armageddon some people were afraid of, fortunately). Millions of vaccinations (34 million in the Netherlands to be exact, two shots for every soul, costing more than 355 million dollars) were ordered and most can now be thrown into the trash. And now there's the possibility our governments will have to admit that millions of people worldwide have been infected with a scary retrovirus, and they have been getting infected for decades. A retrovirus that has been linked to cancer, CFS. If that isn't news...
    And the band played on.
     
  14. gracenote

    gracenote All shall be well . . .

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  15. LaurieM

    LaurieM

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    I just love this understatement from the Reuters report:

    "Chronic fatigue syndrome is a debilitating disorder defined solely by clinical symptoms," the researchers wrote. There is no good test for the syndrome, which can leave patients unable to work.

    Not only am I not able to work, but at this very moment I am desperately struggling to get out of bed to get something to eat for the first time in over 24 hours. :(
     
  16. SOC

    SOC Senior Member

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  17. urbantravels

    urbantravels disjecta membra

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    Oh, I love Scientific American! They have a great podcast. (rushes over to read)
     
  18. SOC

    SOC Senior Member

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    Yeah, the d@mned name is getting in the way again. Reporters still need to be educated AND they need to learn that the CDC website is NOT the go-to source for ME/CFS background info. :rolleyes:
     
  19. SOC

    SOC Senior Member

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  20. anciendaze

    anciendaze Senior Member

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    Don't panic people, spin control only works for a short time. There are new factors in play now:

    1) No one will ever again be able to get away with the idea that they had to construct artificial positive controls to validate a test, because there are no infected people, with or without symptoms. This group has identified healthy blood donors with infection.
    2) Questions about the safety of the blood supply are now wide open.
    3) Excluding viral causes just became much harder. Now, you must look for members of a class of retroviruses.
    4) If you are in a hurry to find people with these viral infections, CFS/ME patients are the easiest ones to check. There are millions of us.
     

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