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