XMRV Virus leads Canadian blood service to ban CFS donors

fred

fred

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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 ?
 
Otis

Otis

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julius said:
The more the virus shows up in healthy controls, the less strength the association with CFS. Hypothetically, if 68% pwc had xmrv and 50% of healthy controls had it, then the link between the disease and the virus is fairly weak. On the other hand if 0 heatlhy controls had it, then the link is very strong. So by downplaying the numbers in the healthies, you are actually emphasising the link between virus and disease.

This is something we could really use. It's been needed for a long time. I think articles like this and the ongoing research will finally see that happen. I don't know who's purview that would fall under however. I don't think it would be CBS.
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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.
 
M

MEKoan

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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
 
julius

julius

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Koan said:
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
Click to expand...

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.
 
Otis

Otis

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julius said:
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.
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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.
 
Frickly

Frickly

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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."
 
serenity

serenity

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that was certainly odd. i am glad they qualified it with a patient who said they see it as a good thing.
 
Kati

Kati

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I suspect she is worried about the same stigma as HIV back in the days?
 
M

MEKoan

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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!
 
julius

julius

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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.
 
M

MEKoan

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julius said:
This is incredible! We are real.
Click to expand...

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.
 
U

usedtobeperkytina

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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
 
Kati

Kati

Patient in training
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5,497
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?
 
julius

julius

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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
 
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