XMRV Virus leads Canadian blood service to ban CFS donors

Kati

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

An AIDS-like virus that has been linked to chronic fatigue syndrome is causing Canadian blood officials to ban anyone who has suffered from the ailment from making donations.

While stressing that researchers have found no definitive links between the virus, known as XMRV, and the chronic fatigue, Canadian Blood Services says they will err on the side of caution and implement the new donation restrictions.

Canada is the first country in the world to make the move, which is being rolled out in donation centres nationwide over the coming weeks, says Dana Devine, head of medical and scientific research with the blood services agency.

Weve basically said okay, lets assume that this might be a problem and lets not wait until all these studies have sorted out the answer, Devine says.

Because were uncertain of the state of the science still, were going to wait until this sorts out and defer anyone whos been diagnosed, she says.

The move was given Health Canada approval last month and will be fully in place in the coming two weeks.

U.S. media outlets reported this week that public health authorities there were investigating the possibility that the retrovirus posed a threat to that nations blood supply.

Because it closely resembles the AIDS virus, many believe XMRV can be similarly transmitted through the exchange of bodily fluids or blood transfusions.

And a study published last October in the prestigious journal Science suggested that XMRV was strongly associated with chronic fatigue.

In the paper, researchers found that many of the 101 study subjects who suffered from the condition also had been infected with the retrovirus. Meanwhile, virtually none of the studys healthy subjects showed any trace of it in their bloodstream.

The chance the virus was there by accident in chronic fatigue sufferers was infinitesimally small, lead study author Judy Mikovits told the Star at the time.

(The virus) undoubtedly causes some of the symptoms that are associated with it (chronic fatigue), said Mikovits, research director of Nevadas Whittemore Peterson Institute for Neuro-immune Diseases.

Mikovits said the virus had almost certainly entered the U.S. blood supply system, but did not know whether it would be susceptible to the same heat treatments that successfully kill off the AIDS virus in blood products.

Three subsequent studies, however, have cast strong doubt on Mikovits findings. Those papers, all released this year, showed little or no link between the virus and chronic fatigue, also known as myalgic encephalitis.

Last September, researchers from the University of Utah also found the virus in prostate cancer cells. While XMRV was shown to be present, researchers found no evidence it contributed to the diseases onset.

Cancer patients are already prohibited from donating blood in Canada, Devine says.

She says her service is part of an international effort to create an effective screening tool that could look for XMRV in all donated blood, should a definitive link to chronic fatigue be found. Because it resembles HIV, she says, the same heating process that can rid blood products like clotting agents of the AIDS virus should also work to kill XMRV.

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.

Maybe the advocacy letters worked...
 

Kati

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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.
 
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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
 

Kati

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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.
 

julius

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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.
 

serenity

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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.
 

julius

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

Otis

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I am also not convinced the current blood supply is 100% safe.
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
 

parvofighter

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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:
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."
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:
 

Esther12

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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.
 

serenity

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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 :)
 

Kati

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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?
 

parvofighter

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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:

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Go get'em!:victory:
 

CBS

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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.
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...
 

glenp

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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
 

julius

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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