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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Media Coverage of Dr. Alters NIH paper, post stories here

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

  1. VillageLife

    VillageLife Senior Member

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    I really hope the USA can help us!
    Londons in some kind of media black out.
    Hopefully a morning cup of coffee, will make our journalists wake up and see sense!
     
  2. Sunshine

    Sunshine Senior Member

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    That is the empathic caring view on the world villagelife.

    We are brainwashed as children to believe if we behave like good little girls and boys no one will tear our wings off if we are nice to people.

    Sadly this is untrue.
     
  3. Dolphin

    Dolphin Senior Member

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  4. LJS

    LJS Insert Witty Comment Here

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  5. Wayne

    Wayne Senior Member

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    Wow LJS, remarkable compilation of links. Thanks much to you and others for your efforts in pulling this all together.

    Best, Wayne
     
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Reuters article is truly a POS. It is too bad that will be one of the ones most widely recirculated.

    Did any article even make the effort to call the disease CFS rather than "fatigue." I'm pissed that Tuller at NYTimes and Marcus at WSJ did this dispite knowing better and being told many times the disease is ME/CFIDS not 'fatigue.' Did all this 'fatigue' nomenclature come from a press release by the paper's authors (perhaps edited by a certain criminally-minded NIAID chief)?

    Nice to also see the CDC site say that we pretty much know that these five new human retroviruses are passed by blood and that if it is proven and confirmed that they cause diseases there then "could" be cause for concern about the blood supply.:confused:

    Alter said in Zagreb in May that XMRV AND related MLVs had been found. Now they're saying no XMRV? Sounds a little fishy.

    Anyway, very glad this paper is out and Komoroff is involved- didn't know that before. This is very good for us, though now the scumbags like McClure and Switzer are already starting to hammer that now the Lombardi paper AND the Alter paper each have to be confirmed separately since they did not find exactly the same retroviruses.

    But for now I'm going to celebrate! Congratulations everyone!!! :victory::victory::victory::victory:
     
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    A suggestion: she should try to understand the subject-matter before reporting about it. I know, I know, this is alot to ask.
     
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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  9. Sasha

    Sasha Fine, thank you

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    UK media coverage: where is it?

    Just been checking the UK media - can't find anything! WTH? BBC, The Times, The Guardian, The Independent, The Telegraph, The Daily Mail (surely they'd love to scare the living cr*p out of everyone about the blood supply?! Today is Tuesday, the day they use their weekly health special to frighten my mother and other vulnerable, elderly people!) - all nada.

    For the paper media, it couldn't have been that the story was breaking too late for them to go to press with it today, could it? Even so, I would have expected something on line at least.

    A Google search on "XMRV Alter" for the past 24 hours gets 13,800 hits; limited to pages from the UK it gets 8 (yes, 8). What the hell is going on? :(:confused::(:confused::(
     
  10. SOC

    SOC Senior Member

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    Really? How so? Admittedly, I'm somewhat foggy tonight, so I could have missed it, but I didn't see any reference to ME or idiopathic chronic fatigue. At least it mentioned immune abnormalities, which is better than we got from most of the articles which were still stuck on "chronic fatigue".
     
  11. Sasha

    Sasha Fine, thank you

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    Just been listening to the first bit of the press conference (thanks for recording & posting that, Julius and Dolphin!). I thought it was a good sign that the reporter from JAMA (the Journal of the American Medical Association, one of the world's top medical journals) asked whether or not clinical trials were premature - I thought that showed that they were taking the idea that XMRV = CFS very seriously.
     
  12. eric_s

    eric_s Senior Member

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    Wow... i'm surprised, too. I thought that when i get up this morning the European papers will have reacted similarily to the North American ones and the story will be everywhere.

    Well, the truth is out now, and all they are doing is degrading themselves to 2nd or 3rd quality. History will judge them. And we will now where to turn if we want to get news when they happen and not some weeks or months later.

    Until now, i have always given people the benefit of the doubt, even people live ERV. I thought, ok there's uncertainty now, let them talk, as long as they don't really cross the line, as soon as replication is there, they will have to come back.
    Now that time is over, as far as i'm concerned. From now on i'll call bs bs and i will hold people responsible for it.

    Has anyone seen the article by Psychology Today? A good example. Link to idiots Now we know they're idiots and i'll call them that way.
    Hey, you idiots, you are fighting a lost battle.
     
  13. VillageLife

    VillageLife Senior Member

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    Ok still NOTHING from UK newspapers....it's a sad day!
     
  14. WithHope

    WithHope

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    The power of a name!

    The news coverage is hugely disappointing. Isnt it strange to know so much about an issue and then be able to judge the accuracy of the international news reporting!

    The lack of interest in the blood supply & the lack of understanding of how debilitating ME/CFS can be is really disappointing. Also the lack of understating of how highly politicised this disease has been and the sordid history (the virus/s may have been discovered years ago had research not been monopolised by a couple of overly -zealous scientists determined to portray the disease as psychological). The years of waste and neglect are shocking not to mention the abuse many patients suffered at the hands of psychiatrists.

    It seems the days of good old investigative journalism are over. There is such an extraordinary story to be told here why is nobody really telling it?!
     
  15. Wasbeer

    Wasbeer

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    Nothing new in the Netherlands....yet.

    (I emailed all major newspapers yesterday and will try to use my friends contacts, who is a journalist)
     
  16. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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    Thanks for the link Eric
    It looks like Dr. Borigini is taking a right pasting in the comments to his stupid article.
    Even a fellow Psyhologist has weighed in with some strong criticism of him.
    Ive added my two pence worth.

    Regards,
    TGOP
     
  17. Jemal

    Jemal Senior Member

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    I mailed them as well... hope they will pick up this story. Many papers have published about XMRV before.
     
  18. eric_s

    eric_s Senior Member

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    Spanish and French seem to be catching on (Spanish more, about 30 articles)

    Some links, can't say anything about the quality, because i haven't read them yet

    http://www.europapress.es/sociedad/...de-provocarlo-virus-raton-20100824112120.html
    http://www.elnuevoherald.com/2010/08/24/788290/sindrome-de-fatiga-cronica-seria.html
    Edit: This seems to be from the US, but there are many more links in spanish

    http://www.santelog.com/modules/con...e-chronique-sur-les-transfuseacutes-_3797.htm

    And seriously now... the French like to riot. Maybe i'm really lacking sleep now, but here's a strange prediction. In the end we might get to see more noise coming from there. They love to strike, occupy factories, burn down some stuff... not saying we should do that, i think the XMRV conference will bring more momentum, things will come, but in my imagination i can already see the French in the streets demanding testing and measures to secure the blood supply. They're a people who won't shut up if they feel like their government owes them something. And they always feel like that :tear:
     
  19. Min

    Min Senior Member

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    :( emailed them yesterday

    maybe they are waiting to ask the opinion of the weasley 'expert'
     
  20. filfla4

    filfla4 Senior Member

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