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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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    http://www.healthzone.ca/health/new...n-blood-service-to-ban-chronic-fatigue-donors


    Maybe the advocacy letters worked...
  2. serenity

    serenity Senior Member

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    Austin
    well i'll be darned, look at that :)
  3. Kati

    Kati Patient in training

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    The Canadian Blood Services website did not release any information as of yet. I suspect Canada doesn't want to be caught in the Hep C fiasco another time.
  4. shrewsbury

    shrewsbury member

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    Yay Canada. First in the world to do this.

    But the last quote makes me wonder "An estimated 340,000 Canadians are diagnosed with chronic fatigue. But Devine says most would be too ill to give blood already and there is little chance the current supply has been contaminated."

    ?????:confused:

    and notice 'syndrome' is missing
  5. Kati

    Kati Patient in training

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    If the 340 thousands would come from the ME/FM association. It is hard to believe that so many doctors know how to diagnose ME/CFS properly in Canada. I am also not convinced the current blood supply is 100% safe.
  6. rebecca1995

    rebecca1995 Apple, anyone?

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    Fantastic news, Kati! Thanks for posting this! :D :D I love it when they're scared of us.
  7. julius

    julius Watchoo lookin' at?

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    Thanks so much Kati. This gives me hope. Real hope. I mean, not only does our government know about it, they are dead serious about it. Surely they will be all over a test when it is available. I hate dancing, but I want to right now.

    The comparison this article keeps making with HIV, although not entirely correct is so helpful to our cause.

    This is just great!! There's so much going through my head right now.

    And I was thinking today was a slow news day.
  8. serenity

    serenity Senior Member

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    haha, Rebecca, the scared part is a little fun isn't it? mean of us i know but come on, as long as we've been ignored we deserve to get some sick peasure out of this. not that i would want anyone to get it, i just want them to pay attention finally.
    Julius, i felt like i got punched in the chest when i read this.
    it made it all very very real to me.
    don't get me wrong i'm happy, i just got that "ton of bricks" feeling.
  9. julius

    julius Watchoo lookin' at?

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    Yeah! Why can't we be discriminated against like aids patients. Why are they so special? Huh?
  10. Kati

    Kati Patient in training

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    Good time for letter writing asking for research money, eh? :)
  11. Otis

    Otis SeƱor Mumbler

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    Kati,

    I agree, it seems unlikely. The words were very carefully crafted to downplay the risk which is probably appropriate so as not to incite panic.

    It does make me feel better about the fact I quit giving blood over a decade ago, when despite the fact I was feeling well enough to donate I didn't.

    Otis
  12. parvofighter

    parvofighter Senior Member

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    Thank you Kati and islandfinn!

    Great find Kati. Thank you! I was astonished when I did my daily Google of "XMRV", JUST how many news media picked up the story of a possible XMRV contamination of the blood supply, and of course Singh et al's work on in vitro efficacy of HIV drugs.

    And I totally agree with islandfinn on this:
    If anything, I believe there is an EXCELLENT chance the XMRV virus is in the blood supply for the following reasons:

    • ME/CFS is horrendously under-diagnosed. Just look at how many of us were laughed out of doctor's offices for years, decades...
    • Mild or early stages of ME/CFS are readily ignored: mistaken for "aging" or (you guessed it) anhedonia, because we don't physically enjoy the things we used to enjoy: the more we do, the worse we feel. Particularly given the complex, multi-system nature of our symptoms, misdiagnosis is rampant. For those epidemiologists out there - we desperately need to shorten the average time to diagnosis. For me, it was 9 years.
    • ME/CFS is like MS in its relapsing/remitting nature. How many of us have had spectacular remissions, returning back to full activity - only to get felled again (and often worse) - later. Had I thought of it at the time, I wouldn't have hesitated to give blood... but I was too busy revelling in being active again! During some of my remissions I was taking weight training classes, mountain biking... re-landscaping a friends' yard "for fun" (including manually doing all the rockwork, patio... you name it) ... and thriving on it - until I crashed again. And each of my early crashes genuinely surprised me, because I had felt GREAT for months! I thought I was rid of whatever wonky health problem I had had. Now I know better.
    The one thing I did pick up for sure from all those "HIV-like virus possibly in the blood supply" is that folks finally seem to be "getting it" just how profoundly ill we are. Good for Canada! It's about "bloody" time folks, it's about bloody time.
    :Sign Help:
  13. Esther12

    Esther12 Senior Member

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    This seems really strange to. This is pure speculation, but to me it seems that some of the moves we've heard about over the last week could indicate that XMRV and CFS is panning out in currently un-published work.

    Big Science paper comes out in October. Blood supplies take no action.

    By April three further paperhave come out all showing no link between CFS and XMRV. Canadian blood supply decided to stop CFS patients from donating blood.


    Seems a bit odd to me.

    I'm pretty clueless on how these things work, and it could be it just took them six months to decide to take action - the US haven't taken any action, and you'd think they'd be pretty plugged in to ongoing research.... maybe it's just a coincidence that a few more positive hints on XMRV have come out over the last week. I'm still deeply hesitant to assume too much at this point, but I'd almost given up on XMRV a week ago, and there are a few more flickers of hope now.
  14. serenity

    serenity Senior Member

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    oh, i'm sure we will be Julius. that's why the ton of bricks hit me.
    once we know this is all for real, it's going to get very very real.
    probably worse before better, with the way people react & the drugs we'll have to take...
    but then, a chance at a better life. so all worth it :)
  15. Kati

    Kati Patient in training

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    So... when do you start writing to the papers, and the medical colleges, making sure that THEY know too?

    On another tengent, what about the patients with fibro, and atypical MS that are "fine" ? How about the patients with queried prostate dysplasia?
  16. parvofighter

    parvofighter Senior Member

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    For those of you feeling energetic (LOL)

    There are several ways people could follow up on this article. For this particular website and newspaper:

    • Contact the author, Joseph Hall
    • Write to healthzone.ca
    • Write a letter to the editor
    • Submit an article
    Contact info here:
    Here is the contact information if you want to connect with Joseph Hall, who wrote the article here:http://www.healthzone.ca/health/new...n-blood-service-to-ban-chronic-fatigue-donors

    He wrote for healthzone.ca, which is part of Toronto Star Newspapers Limited.

    How to reach someone at the Star
    Most staff members, including reporters, editors, columnists and photographers, can be reached by email. In most cases the email address follows this formula (all lower case, don't type spaces or the plus sign): first initial + last name @thestar.ca. So I'm guessing jhall@thestar.ca

    You can also reach staff in the Editorial department (newsroom) via phone at 416-869-4300 begin_of_the_skype_highlighting 416-869-4300 end_of_the_skype_highlighting or fax at 416-869-4328. Editorial staff members can also be contacted within the department they work for.
    To reach a freelance writer, please contact the section of the newspaper in which his or her article appeared.

    healthzone.ca
    Editor: Brandie Weikle
    Phone: 416-945-8738 begin_of_the_skype_highlighting 416-945-8738 end_of_the_skype_highlighting
    Email: bweikle@thestar.ca

    Letters to the Editor Send your contribution to Letters to the Editor via email to lettertoed@thestar.ca; via fax to 416-869-4322; or by mail to One Yonge Street, Toronto, Ontario M5E 1E6. Letters must include full name, address and all phone numbers of sender (daytime, evening and cellphone). Street names and phone numbers will not be published. We reserve the right to edit letters, which typically run 50-300 words. Please note: We get many more letters than we have space to print. Due to the volume, we unfortunately cannot acknowledge every submission.

    Submitting an article Stories, commentaries or opinion pieces should be submitted to the section of the Star to which they're best suited.
    Alternatively, they can be sent by fax to 416-869-4328 or email to city@thestar.ca. Hard copies can be mailed to a specific section of the paper or the Editorial Department at One Yonge Street, Fifth Floor, Toronto, Ontario M5E 1E6.

    Go get'em!:victory:
  17. jimbob

    jimbob ME/CFS84-XMRV+

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    way to go Canada, but please stop calling it chronic fatigue! Kati, straighten them out for me, will you?
  18. CBS

    CBS Senior Member

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    Do we know this? I wouldn't be surprised if the first official word we hear from the HHS is that everything is under control. For all we know, the blood supply is being screened right now and the HHS feels that they can catch any newly contributed blood or that the risk of missing a few pints isn't worth the panic and costs associated with saying something before they do have it under control.

    I'm just saying...
  19. glenp

    glenp "and this too shall pass"

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    Great Kati

    Thank - you for posting this. Its about time someone has stopped the blood donations.

    This is not accurate here:

    "An estimated 340,000 Canadians are diagnosed with chronic fatigue. But Devine says most would be too ill to give blood already and there is little chance the current supply has been contaminated
    "

    I still have my red cross blood donation card from when I donated blood. I was always told that it was psychiatric and part of life until I got a knowledgeable psychiatrist, a new gp and Dr. Carruthers. I bet there are many more!! I wonder how the people are that got my blood? Is the red cross interested in knowing, I doubt very much.

    glen
  20. julius

    julius Watchoo lookin' at?

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    As far as it being in the blood supply, I personally gave blood sometime in the early nineties, and I was definitely sick then. So at least one case.

    Re: writing letters etc. I definitely have the energy for this. But lets try to be united. What do we want?

    1) Research? If so, into what specifically? Prevalence, transmission, treatment, testing....any thoughts? Personally, I've mentioned before, I feel that it's a bit late to be pushing for research, but if you guys think it's what we should shoot for, I'm in.

    2) Physician education?

    3) Public awareness?

    4) Doggy treats for Parvo and fertilizer for Kati?

    5) Many other possibilities I haven't thought of?


    edit: glenp posted at same time...so two cases of sickies giving blood

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