1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia
Simon McGrath looks at theories that microglia, the brain's immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

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. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    What are people's views on splitting this thread in two: one to discuss the Canadian statement; and the other to discuss options for lobbying other countries to follow suit ?
  2. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    Thanks for elaborating on the controls point, I see what you're saying but the numbers are what they are, in the case of the Science article 3.7%. Also, while artificially claiming a lessor number of positive controls would increase the link between the between the virus and disease it also inaccuratly decreases the apparent risk to the blood supply which is what I was attempting to say.

    No I don't imagine it's the CBS's job to educate. Heck in the US our own advocacy org has botched that and the need is universal.

    Yes Koan HUGE is the right word! I hope tbe rest of the world catches up...

    I'm going to shut up and saltute my friends north of the boarder for taking a very prudent step in protecting the blood supply. I never meant to dilute that message.
  3. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Otis, my friend, you never did dilute that message nor were you ever anything but totally cool to hang with as we absorb this great news! I'm glad we got to do this!!!

    Koan
  4. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    Same here. This is the kind of discussion I hope for when I come to the forum. These are important issues and we need to take a look at all angles.
  5. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Hey Julius,

    What you said.

    Peace out!
  6. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    Thank you Julius and Koan - I have enjoyed the dialog!

    I do find it strange that the CBS didn't make an announcement. I poked around the web site earlier and did some searches and didn't turn up anything 'official'. A non-announcement seems a little odd but perhaps is consistent with a low-profile approach.
  7. Kati

    Kati Patient in training

    Messages:
    1,985
    Likes:
    1,329
  8. serenity

    serenity Senior Member

    Messages:
    571
    Likes:
    3
    Austin
  9. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    35
    Texas
    I can't beleive this lady in the CBC interview said the following: (a trained nurse and head of a support group)

    "Kathy Murdoch, a trained nurse who heads a support group in Winnipeg for people with chronic fatigue syndrome, understands the importance of a safe blood supply, but she thinks imposing a ban doesn't send the right message."
    "Things are coming up every day that we don't know about. It has a negative connotation, you know, like we don't want you," Murdoch said."
  10. serenity

    serenity Senior Member

    Messages:
    571
    Likes:
    3
    Austin
    that was certainly odd. i am glad they qualified it with a patient who said they see it as a good thing.
  11. Kati

    Kati Patient in training

    Messages:
    1,985
    Likes:
    1,329
    I suspect she is worried about the same stigma as HIV back in the days?
  12. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Yeah, that was odd but I was not sorry to see it. I was incredulous but not sorry. Who would have thought it was possible to come up with an ME/CFS support group leader, and nurse, who would personify the reality that we are not driving this, the science is. I'm stunned!
  13. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    Now that this is on CBC, there is a good chance Jack Layton will be aware of XMRV, if he wasn't already. Given the unified support he recieved in Parliament over his personal struggle, this could really take off.

    This is incredible! We are real. There's no stopping this thing now.

    Kati, how do you find all this stuff?!? You are a monster.
  14. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    I'm saluting you guys.

    Can you see me?

    Can you see me?
  15. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    I'm so sorry that Jack Layton is sick because I am terribly fond of both Jack and his wife, Olivia Chow (also a Canadian politician) and I'm a life long NDP supporter but it is a perfect, if terrible, storm. His father also had prostate cancer; XMRV must be on his radar. Also, Jack is teamed with Stephen Lewis's foundation to raise money to combat HIV/AIDS in Africa. He knows about this, for sure.
  16. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
  17. Recovery Soon

    Recovery Soon Senior Member

    Messages:
    380
    Likes:
    37
  18. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    I love this, No evidence that blood is less safe than it was. LOL And so does that mean it has always been safe? Or is it that it hasn't been safe for a while?

    Which ever way, it isn't any less safe than it was.

    Tina
  19. Kati

    Kati Patient in training

    Messages:
    1,985
    Likes:
    1,329
    My second post hasn't been posted. There was nothing objectable in it!!!

    By the way don't forget to watch the video attached to this article. The only objectable thing they say is chronic fatigue. Grrrrrr!
    And one more comment, they say that the blood supply is not affected because the patients are generally too sick to donate. Wait a minute... Sometimes we are too sick to donate, sometimes we are not sick enough for disability... Double standard?
  20. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    mine got printed

    @ dr love the right

    Yes, the Science article reported 67% prevalence in CFS sufferers. However, the PCR assay used in that study has been shown to be very limited in its ability to detect XMRV. Since the publication several labs, and government institutions have been co-operating in developing more sensitive assays, and have managed to validate effective serology techniques. Preliminary reports are suggesting that with these newer assays, the prevalence is much higer, as high as 98%.

    The statement that CBT is effective against CFS is not supported by rigorous scientific study, and is in fact patently false. Most credible research has shown that psychotherapy is completely ineffective.

    It is unfortunate that practicing physicians are too busy or unable to read the published literature on CFS, and have instead relied on detailing for their continued education.

    Read more: http://www.cbc.ca/health/story/2010...tigue-virus.html#socialcomments#ixzz0kU6KiRMs

See more popular forum discussions.

Share This Page