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XMRV Virus leads Canadian blood service to ban CFS donors

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Kati, Apr 6, 2010.

  1. Kati

    Kati Patient in training

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    What do you mean about detailing for their ontinued ed Julius? Nice post.
     
  2. Lily

    Lily *Believe*

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    I assumed Julius meant docs depend on pharmacuetical reps detailing drugs for their continuing education. Seems like what they do in the US anyway:)
     
  3. julius

    julius Watchoo lookin' at?

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    yeah, I mean drug 'detailers'. Thats the ridiculous term pharma use for drug reps nowadays.
     
  4. Kati

    Kati Patient in training

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    Well said Julius. Take that Dr-who-believes-in-false-ilnesses.
     
  5. bullybeef

    bullybeef Senior Member

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  6. fred

    fred The game is afoot

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  7. parvofighter

    parvofighter Senior Member

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  8. V99

    V99 *****

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    WPI applauds Canadian government for response to blood supply.

    WPI applauds Canadian government.

    Posted on facebook & WPI news page.

    http://www.montrealgazette.com/mobile/iphone/story.html?id=2775203
     
  9. Kati

    Kati Patient in training

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    :victory::victory::victory::victory::victory:Victory!!!:victory::victory::victory::victory::victory:
     
  10. Min

    Min Senior Member

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    :victory: :victory:
     
  11. parvofighter

    parvofighter Senior Member

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    Letter sent to Medical Editor of Globe and Mail

    Hi folks,

    Paul Taylor is the Globe and Mail's Health Editor, and he wrote a short piece (April 8-9th) on XMRV and the Canadian ME/CFS ban here: http://www.theglobeandmail.com/life/health/fruit-may-not-cut-cancer-risk/article1528285

    His email address is: ptaylor@globeandmail.com

    Sample letter to media
    I sent him my summary of why I believe the ban is essential, with the following excerpted introduction:
    Dear Mr Taylor,
    I'd like to express my appreciation for your piece on XMRV and Chronic Fatigue Syndrome on GlobeLife MOBILE. You referred to follow-up studies conducted in Britain and the Netherlands, and I thought you might be intrigued by a prcis on the science and politics of XMRV, from someone with a viewpoint from the trenches. Greed. Incompetence. Jealousy. Inspiration. Innovation. It's all there, and would make a GREAT story for the Globe and Mail! But there's more...

    A point to kick-off with: Dr Devine of the Canadian Blood Services stated on XMRV that "we dont know whether it is transmissible by blood". That's not quite true. What made the retroviral and prostate cancer world sit bolt upright and take notice in October 2009 is that the Science researchers WERE able to infect cell lines with blood from patients with CFS. THAT'S what got the prostate cancer and CFS world in a tizzy! To quote from the Science article's Abstract ( http://www.ncbi.nlm.nih.gov/pubmed/19815723 ):

    "Cell culture experiments revealed that patient-derived XMRV is infectious and that both cell associated and cell-free transmission of the virus are possible. Secondary viral infections were established in uninfected primary lymphocytes and indicator cell lines following exposure to activated PBMCs, B cells, T cells, or plasma derived from CFS patients."

    Dr Devine of the Canadian Blood Services also stated that, "The science (on Chronic Fatigue Syndrome) has now become more confusing, not less confusing." I would heartily disagree! As a patient immersed out of sheer necessity in the latest XMRV science (I'm in my 40's, but have viral heart disease and stroke symptoms after over a decade of ME/CFS), and a former health professional myself, I thought it might be helpful to provide a primer on the scientific clarity we are gaining on XMRV and CFS. The fact that 10 million Americans (and ~1.36 Million Canadians) might be infected with this potential cancer-causing retrovirus is no small matter - and in fact is grist for an explosive investigative piece. In the materials below, I've referenced as much of the data as possible, so you can go direct to the sources to verify.

    ...Here is a summary on why the ban on CFS blood donations is essential...
    Feel free to use this info if helpful in your other letter writing & advocacy. If you post it elsewhere online, kindly provide the URL hotlink.

    Parvo:Retro smile:
     
  12. Kati

    Kati Patient in training

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    Great job Parvo~
     
  13. bullybeef

    bullybeef Senior Member

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    Thanks Catch,

    Another member from Canada sent me this quote too. It is pretty clear, isn't it? But it will be interesting how far the ban is in regards to direct family members. How do we know we didn't inherit XMRV for our ancestors?

    I've have a feeling another country, hopefully European, will announce their own country wide ban. My guess is France, whom have been very quiet about XMRV. But they went quietly, going about their business with HIV 30 years ago. If not European, then Japan have reasons to announce some kind of ban, but on whom remains to be seen, mainly because their studies didn't specifically include ME patients.
     
  14. Doogle

    Doogle Senior Member

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    I'm confused by this in Dana Devine, Ph.D's article Canadian Blood Services Responds to Possible New Blood Safety Threat.

    "It was also unclear from this study whether there was actually live virus in healthy people as these researchers were only able to demonstrate a piece of the XMRV genome called gag but not other parts of the virus that one would expect to find if the virus was intact and capable of being infectious."

    I thought WPI sequenced the whole virus in some individuals.
     
  15. Sing

    Sing Senior Member

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    Thanks, Parvo. You are a great fighter!

    Sing
     
  16. shrewsbury

    shrewsbury member

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    Canadian Blood Services Deferring Certain Donors
    Thursday, 15 April 2010

    Another medical doctor and person of importance in the blood supply in Canada who displays ignorance as to what ME/CFS is.
     
  17. V99

    V99 *****

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    BMJ - Canada bans blood donations from people with history of CFS

    I cannot access the whole article, but here is the link & extract.

    http://www.bmj.com/cgi/content/extract/340/apr09_2/c1974?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=canada&searchid=1&FIRSTINDEX=0&sortspec=date&resourcetype=HWCIT

     

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