XMRV Virus leads Canadian blood service to ban CFS donors

[Kati]

What do you mean about detailing for their ontinued ed Julius? Nice post.

 

[Lily]

I assumed Julius meant docs depend on pharmacuetical reps detailing drugs for their continuing education. Seems like what they do in the US anyway

 

[julius]

yeah, I mean drug 'detailers'. Thats the ridiculous term pharma use for drug reps nowadays.

 

[Kati]

yeah, I mean drug 'detailers'. Thats the ridiculous term pharma use for drug reps nowadays.

Well said Julius. Take that Dr-who-believes-in-false-ilnesses.

 

[bullybeef]

Would it be possible for one of our Canadian friends to ask the Canadian Blood Service whether they could clarify if the ban mean everyone whom has had ME, be it they've 'recovered', or entered in remission? And if it the defers family members of ME sufferers?

I have tried to email, but it wasn't delivered. Here's their email address: onematch@blood.ca
And the website: http://www.bloodservices.ca/centrea...e/DonorClinicLocations?OpenDocument&CloseMenu

 

[fred]

Note that I've started a new thread to capture ideas for lobbying for similar action in other countries and have copied relevant info across from this thread.

http://www.forums.aboutmecfs.org/sh...for-same-in-other-countries&p=66017#post66017

 

[parvofighter]

Thanks Fred!

Thanks again Fred - great idea!

I've posted a letter I sent to the Cdn Hemophilia Society on Sunday nite, as well as a longer one sent to the CBC today. Feel free to cut/paste etc.

The letters are posts #10 and #11 on Fred's new thread: http://www.forums.aboutmecfs.org/sh...n-ban-campaigning-for-same-in-other-countries

Parvo:Retro smile:

 

[V99]

WPI applauds Canadian government for response to blood supply.

WPI applauds Canadian government.

Posted on facebook & WPI news page.

April 8, 2010: The WPI applauds the Canadian government for their response to the findings of a new human retroviral infection, XMRV, in patients with ME/Chronic Fatigue Syndrome. Due to the serious nature of this illness, and the possibility of transmitting XMRV through blood transfusions, we believe that it is very important for individuals with ME/CFS to refrain from donating blood at any time.
Read the story ("Canada bans blood donations from people with chronic fatigue," April 7, 2010) at Canwest News Service.

http://www.montrealgazette.com/mobile/iphone/story.html?id=2775203

 

[Kati]

:victory::victory::victory::victory::victory:Victory!!!:victory::victory::victory::victory::victory:

 

[Min]

:victory: :victory:

 

[parvofighter]

Letter sent to Medical Editor of Globe and Mail

Hi folks,

Paul Taylor is the Globe and Mail's Health Editor, and he wrote a short piece (April 8-9th) on XMRV and the Canadian ME/CFS ban here: http://www.theglobeandmail.com/life/health/fruit-may-not-cut-cancer-risk/article1528285

His email address is: ptaylor@globeandmail.com

Sample letter to media
I sent him my summary of why I believe the ban is essential, with the following excerpted introduction:

Dear Mr Taylor,
I'd like to express my appreciation for your piece on XMRV and Chronic Fatigue Syndrome on GlobeLife MOBILE. You referred to follow-up studies conducted in Britain and the Netherlands, and I thought you might be intrigued by a prcis on the science and politics of XMRV, from someone with a viewpoint from the trenches. Greed. Incompetence. Jealousy. Inspiration. Innovation. It's all there, and would make a GREAT story for the Globe and Mail! But there's more...

A point to kick-off with: Dr Devine of the Canadian Blood Services stated on XMRV that "we dont know whether it is transmissible by blood". That's not quite true. What made the retroviral and prostate cancer world sit bolt upright and take notice in October 2009 is that the Science researchers WERE able to infect cell lines with blood from patients with CFS. THAT'S what got the prostate cancer and CFS world in a tizzy! To quote from the Science article's Abstract ( http://www.ncbi.nlm.nih.gov/pubmed/19815723 ):

"Cell culture experiments revealed that patient-derived XMRV is infectious and that both cell associated and cell-free transmission of the virus are possible. Secondary viral infections were established in uninfected primary lymphocytes and indicator cell lines following exposure to activated PBMCs, B cells, T cells, or plasma derived from CFS patients."​

Dr Devine of the Canadian Blood Services also stated that, "The science (on Chronic Fatigue Syndrome) has now become more confusing, not less confusing." I would heartily disagree! As a patient immersed out of sheer necessity in the latest XMRV science (I'm in my 40's, but have viral heart disease and stroke symptoms after over a decade of ME/CFS), and a former health professional myself, I thought it might be helpful to provide a primer on the scientific clarity we are gaining on XMRV and CFS. The fact that 10 million Americans (and ~1.36 Million Canadians) might be infected with this potential cancer-causing retrovirus is no small matter - and in fact is grist for an explosive investigative piece. In the materials below, I've referenced as much of the data as possible, so you can go direct to the sources to verify.

...Here is a summary on why the ban on CFS blood donations is essential...
​

(and then I attached Post #10 from here: http://www.forums.aboutmecfs.org/sh...ame-in-other-countries&highlight=canada+blood )
​

Feel free to use this info if helpful in your other letter writing & advocacy. If you post it elsewhere online, kindly provide the URL hotlink.

Parvo:Retro smile:

 

[Kati]

Great job Parvo~

 

[bullybeef]

Hi bullybeef,

This quote from Professor Devine clears part of this up:



The question about family members is a good one. I guess they're waiting for more information before they widen the ban.

Thanks Catch,

Another member from Canada sent me this quote too. It is pretty clear, isn't it? But it will be interesting how far the ban is in regards to direct family members. How do we know we didn't inherit XMRV for our ancestors?

I've have a feeling another country, hopefully European, will announce their own country wide ban. My guess is France, whom have been very quiet about XMRV. But they went quietly, going about their business with HIV 30 years ago. If not European, then Japan have reasons to announce some kind of ban, but on whom remains to be seen, mainly because their studies didn't specifically include ME patients.

 

[Doogle]

I'm confused by this in Dana Devine, Ph.D's article Canadian Blood Services Responds to Possible New Blood Safety Threat.

"It was also unclear from this study whether there was actually live virus in healthy people as these researchers were only able to demonstrate a piece of the XMRV genome called gag but not other parts of the virus that one would expect to find if the virus was intact and capable of being infectious."

I thought WPI sequenced the whole virus in some individuals.

 

[Sing]

Thanks, Parvo. You are a great fighter!

Sing

 

[leelaplay]

Canadian Blood Services Deferring Certain Donors
Thursday, 15 April 2010

As a precaution, Canadian Blood Services is banning donations from anyone with a history of Chronic Fatigue Syndrome.

Dr. Deborah Lane, Medical Director for CBS in Manitoba, says CFS has always been a part of the screening process.

Those who had the syndrome but were better, could donate.

You would only be deferred if you were sick at the time.

Now, anyone with Chronic Fatigue Syndrome in their history cannot donate blood.

Dr. Lane says some studies suggest there may be an association between CFS and the retrovirus XMRV, which belongs to the same family as HIV.

She adds though, that the data in different studies is conflicting, but the decision was made that until there is a definitive answer, they will err on the side of caution.

Canada is the first country to make the move.

Lane says she believes deferring those with chronic fatigue syndrome won't have a big impact on the amount of blood donations, because it's a small percentage of the donor base.

(ct/apr15/10)

Another medical doctor and person of importance in the blood supply in Canada who displays ignorance as to what ME/CFS is.

 

[V99]

BMJ - Canada bans blood donations from people with history of CFS

I cannot access the whole article, but here is the link & extract.

http://www.bmj.com/cgi/content/extract/340/apr09_2/c1974?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=canada&searchid=1&FIRSTINDEX=0&sortspec=date&resourcetype=HWCIT

Published 9 April 2010, doi:10.1136/bmj.c1974
Cite this as: BMJ 2010;340:c1974


Canada bans blood donations from people with history of chronic fatigue syndrome
Barbara Kermode-Scott


Canada’s national blood service has announced that from next month it will ban blood donations from people with a medical history of chronic fatigue syndrome, as a precautionary measure. It is the first country in the world to do so.

"Canadian Blood Services takes the safety of the blood supply very seriously," said Dana Devine, the agency’s vice president of medical, scientific, and research affairs. "Until recently Canadian Blood Services has accepted blood donations from donors who report a history of [chronic fatigue syndrome] but are now well. Donors who are not well may not donate blood."

Dr Devine cited a report published in Science last October (2009;326:585-9, doi:10.1126/science.1179052) suggesting a link between the syndrome and the presence of a retrovirus, the xenotropic murine leukaemia virus related virus (XMRV).

The study, which looked at peripheral blood mononuclear cells from patients with chronic fatigue syndrome, identified DNA from XMRV . . . [Full text of this article]


Relevant Article
Study fails to show link previously found between virus and chronic fatigue syndrome
Susan Mayor
BMJ 2010 340: c1033. [Extract] [Full Text]