XMRV Virus leads Canadian blood service to ban CFS donors

[Kati]

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.

Yes we need research. All of the above. We need canadian scientists to understand XMRV, and co-infections like Lyme and Parvovirus. We need better technologies to diagnose these. We need them to work with Goff, Singh, Mikovits. We need Canada to be involved with clinical trials.


2) Physician education?

OMG do we ever need physician education. I will write to the college of physicians and surgeons urging more knowledge and education in medical school. This is when we need Dr Carruthers to come out of retirement (a la David Bell) in Vancouver BC. We need our consultant to be knowledgeable not only about XMRV, but also about ME/CFS and its morbidity (PEM and OI for instance). Did I mention my family dr laughed at me when I told her I wanted to be tested for Parvovirus?

3) Public awareness?

Goodness yes. Let's have the public a little worried about XMRV. Let's have families worried about their autistic child and asking for more fund to look up associations with XMRV. Honestly, I think that after the AIDS epidemics, the population can handle the information.


4) Doggy treats for Parvo and fertilizer for Kati?

Huh!??! Fertilizer?


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

Remember that if a patient is not passing on the information, some people that have no idea about CFS will write and won't necessarily pass the right information. Might as well do it right.


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

'Let's go get em tiger!

 

[julius]

Huh!??! Fertilizer?

Yeah, fertilizer! Look at ur avatar, you silly flower.


So all of the above eh? That's a big order. Gonna have to get a good nights sleep tonight.

 

[Robin]

i also feel very weird about all the comparions to HIV.

like MLV and FeLV, is travels in saliva too. they dont seem to be telling people to be careful when thats the way most have gotten it.

The way most people have gotten CFS? Or HIV?

 

[Kati]

Personally I am convinced I got it from a cancer patient spitting when talking, his saliva in my mouth. I forgot what cancer, but let's say prostate??? Hmmm... Rings a bell?

 

[Kati]

Yeah, fertilizer! Look at ur avatar, you silly flower.


So all of the above eh? That's a big order. Gonna have to get a good nights sleep tonight.

Julius, all I need is a better camera to capture more silly flowers and also good health to hold the camera without shaking or fearing I will pass out.

 

[serenity]

"I think that after the AIDS epidemics, the population can handle the information."
Kati, i am hoping this is true. this is what keeps my fears at bay a bit about people freaking out on me. they did get an education about this sort of thing before.

 

[Sing]

Canada's the front runner again. Thanks, Kati, for letting us know. And Danib--I so share your feelings. Your description was a kinesthetic and visceral score.

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.

Helping each other face and respond to each of these challenges really helps!

Sing

 

[serenity]

thanks Sing, that one hit me hard. but that's ok, i've been prepared to deal with whatever comes on this ride.
i still think the enemy you know is better than the one you don't
but that one was a BAM POW moment for me - in every way, bad & good
doubled me over, i had to lay down - take a shower, took a bit to shake it off
i really started to think about the implications ... personally ... for me
for me it was like "ok this is real, i can stop fighting & relax. people know now, they get it"
that is huge, i've been dealin with them not gettin it for so long
then at the same time, well there's a whole new mess to deal with isnt' there?
it's ok, i'm ready, i think...

 

[Kati]

We are in this together. That's the beauty of this forum. We can work things through, share opinion and emotions. It is what it is and those around us that can't bear, that's their problem. We haven't done anything wrong, just caught something. Some probably got born with it.

 

[serenity]

thanks Kati, glad you guys are here - i just really got flooded by the reality of this when i saw this article. i've had the "ok that is it they have to get it now" feeling over quite a few articles posted in the last few days but this one took the cake.

 

[usedtobeperkytina]

What we want from a blood bank is a press conference so the public will be protected. Not every CFSer is connected through CFS Web sites or seeing a CFS doctor.

An announcement in the lay media, evening news, is expected for something that is public health concern. Since they don't have reliable tests and contaminated blood could be getting in, then the only safety they have now is that CFSers stop donating blood. To reach all of them, they need to make a public announcement, big splash.

But, they don't think CFSers are donating anyway. But, I did notice they said how sick we are. Has anyone besides CFS specialist docs said that?

Tina

 

[julius]

enjoy the ride danib. The first time you go out it the sun after a long winter, you may get a bit burned.....but it's still really freakin nice to see the sun isn't it.

 

[serenity]

yes, i finally see a light at the end of the tunnel & it is really nice!
thanks for the reminder Julius (love your profile pic )

 

[Kati]

What we want from a blood bank is a press conference so the public will be protected. Not every CFSer is connected through CFS Web sites or seeing a CFS doctor.

An announcement in the lay media, evening news, is expected for something that is public health concern. Since they don't have reliable tests and contaminated blood could be getting in, then the only safety they have now is that CFSers stop donating blood. To reach all of them, they need to make a public announcement, big splash.

But, they don't think CFSers are donating anyway. But, I did notice they said how sick we are. Has anyone besides CFS specialist docs said that?

Tina

Very very true. I may just give them a call tomorrow- the blood bank. See what they plan to do. A person to person conversation is good!

 

[Stuart]

Or we could just...

[video=youtube;D7UKllR0Edo]http://www.youtube.com/watch?v=D7UKllR0Edo[/video]

:innocent1:

 

[Kati]

Here is a copy of my letter to the Canadian Blood Services:

To whom it may concern.

in this recent article, http://www.healthzone.ca/health/new...n-blood-service-to-ban-chronic-fatigue-donors


I have learnt that chronic fatigue syndrome patients will not be allowed to give blood in Canada, and this makes this country the first of the world to ban these patients to give blood, regardless of their health status.

Although this is excellent news, I would have preferred to hear the news directly from the Blood Transfusion Services since this concerns the whole Canadian populations and it also concerns other countries who haven't made any decisions in this regards yet.

I would like to know if you have an intention to hold a national and provincial press conference to announce this important news. I would like to know when. I would like to know if you intend to keep the Canadian population informed about the progress of the research on XMRV, and whether you feel that the early cases of prostate cancer should also be banned from donating blood.

I would also like to know if all the physicians in Canada will be made aware of XMRV and the risk of donating blood for their patients who have had symptoms of chronic fatigue syndrome. As you may know, ME/CFS has been very controversial, still is, and some physicians refuse to diagnose, treat and acknowledge this disease as a serious infectious disease. I would urge you to refer all the physicians to our current diagnosis criteria, the "Canadian Consensus" at this link:
http://www.cfids-cab.org/MESA/ccpccd.pdf
This document is recognized to diagnose patients with ME/CFS and is used also to select subjects for studies including the 2009 Lombardi XMRV study.


I would appreciate an answer on this very urgent matter. Thank you, *****

 

[Kati]

Or we could just...

[video=youtube;D7UKllR0Edo]http://www.youtube.com/watch?v=D7UKllR0Edo[/video]

:innocent1:

Well now Stuart... This is a bit much after hosting such good Olympic Games!!!

 

[MEKoan]

There is room, of course, for all of our reactions and our ways. I am content, now, to thank them for leading the way and to stress the potential cost of the spread of this illness both in financial and human terms. I applaud them for doing their part well and thank them for protecting the health of Canadians by protecting the blood supply, their only mandate, in a timely fashion. For me, that was what I felt was needed now.

I suppose if you put us all together, we cover every possible angle and that's good.

Peace out,
Koan

 

[gracenote]

Just have to add my two cents as a non-Canadian.

 

[julius]

Kati,

I don't know if you were wanting feedback, but I found your letter almost sounded like you disagreed with their decision. From reading your earlier posts I don't think this is the case. Just an observation. Hope it doesn't offend.

Have you sent it already?