Discussion in 'Action Alerts and Advocacy' started by fred, Apr 8, 2010.
Very nice, Parvo!
I've just been rereading the Wall St Journal story again, and, although I guesstimated the possible numbers, reading it in print makes it so much more serious:
Dr. M was quoted last year saying XMRV would be TEN time the incidence of HIV/AIDS. 34million people have HIV/AIDS globally, so it is easy to calculate how many people would have XMRV. In terms of numbers, XMRV could rank right up there with the historical diseases: the bubonic plague and small pox!!
:Sign Good Job: Frickly - thanks so much for all your hard work.
US and UK blood service organisations
More potential contacts.
American Red Cross.
American Association of Blood Banks.
United Blood Services in the US.
America's Blood Centers.
The National Blood Service in the UK.
Is that not the truth we all want? Excellent point.
I have just emailed all (yes, all - I may be asleep for some time) of the chapters of the US National Hemophilia Foundation with the following. They may not thank me for the mass mailing, but I will do anything I can to protect other people (and, particularly, future generations) from the risk of contracting this awful disease.
Are you aware that the Canadian Blood Service has banned donations of blood from people with ME as a precautionary measure to prevent potential contamination with XMRV (the new human retrovirus which is associated with ME and certain types of prostate cancer)?
"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."
Does the NHF have a view on whether a similar action would be a sensible precautionary measure across the US?
I would also suggest that the Canadian Hemophilia Society might have more specific information on the Canadian ban.
Fred, where does it give info on the Canadian Haemophilia Society website?
I only put the website url as a means of finding their contact details, rather than as a reference to details about the ban.
Fred your Awesome! Have a nice rest.
UK Blood Service media and PR line
OK, here's one for the Brits. This is the media and public relations number for the UK National Blood Service.
0117 969 2444
Try ringing them and asking if they're going to make a public statement in response to the Canadian Blood Service's ban on pwME *ever* giving blood as a precaution to prevent XMRV contamination.
You don't have to give your details - you can remain anonymous, if you wish.
Remember that (a) in the 80s/90s, UK blood was contaminated with HIV and Hep C (amongst other things) from blood imported from the US and (b) no (sensible) country in the world accepts blood donations from UK citizens because of the risk of vCJD (mad cow) contamination.
Even the Brits import their blood plasma from the US - and they still don't use the lastest methods for screening for vCJD prions.
The Brits don't have a great track record in protecting their blood supply - so you have a right to ask these guys 'what are you doing about XMRV?' and 'if Canada thinks there's an issue, why doesn't Britain?'.
I made the call and was asked 'What Canadian ban?'.
Oh, and if they say pwME are already banned from giving blood, you can say that they are allowed to donate when they are 'fully recovered' (according to Gillian Meron in the House of Commons) - but you don't 'fully recover' from a retrovirus. End of.
Great work Fred.
I've been on the UK blood site a couple of times and done the online screening questions, interesting when you dig a bit further and access the minutes of the advisory committee on screening blood donations and organ/tissue donation. I will post again later on that.
Sleep Fred sleep.
Potential response from ESME
This has been posted on ESME's Facebook page.
"ESME has asked some Think Tank panel doctors for their statement of blood donation and XMRV virus. So later maybe more."
Adam: I don't sleep. I crash. :In bed:
Reply from the Word Federation of Hemophilia
Thank you for your question. The World Federation of Hemophilia is closely following scientific developments with regard to XMRV.
The decision by Canadian health authorities to defer blood donors who have had chronic fatigue syndrome (CFS) is a precautionary measure taken when there is incomplete information about XMRV. All indications are that an enveloped virus such as XMRV is not a threat to plasma-derived products, such as clotting factor concentrates, as it would be inactivated by current pathogen reduction processes. The action in Canada ensures that recipients of fresh blood products (red cells, platelets, fresh frozen plasma) will also not be at risk. Furthermore the supply of donated blood should not be affected as most people with symptoms of CFS were not eligible to be blood donors even before this decision.
For more information, please contact the Canadian Hemophilia Society, a national member organization of the WFH, at firstname.lastname@example.org...
PPTA statement: http://www.pptaglobal.org/news/news.aspx?nid=59
BMJ reports on Canadian blood ban
Canada bans blood donations from people with history of chronic fatigue syndrome
1 Calgary, Alberta
The first 150 words of the full text of this article appear below.
Canadas 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 agencys 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]
I had always heard ME patients were banned from donating blood in the uk. They aren't?
From post #4
Neither the UK Government nor the Chief Medical Officer has stated definitively that people with ME can *never* give blood.
From The MEA (my emphasis).
The Health Secretary has been asked to give reasons why people with ME may not donate blood. The request came in a written question from David Drew, Labour MP for Stroud, who has asked a stream of other questions about ME in the past few weeks (type 'Drew' into the search box to see some of the others).
In a written answer provided on 10 March, Ann Keen (the parliamentary under-secretary of state for health) replied:
"People with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), are not able to donate blood until they have fully recovered.
"The reasons for this are: first, blood donors need to be in good health, and people with ME/CFS often experience a range of symptoms which could be made worse by donating blood; and second, as the causes of ME/CFS are not currently fully understood, people with the condition are deferred from donating blood as a precautionary measure to protect the safety of the blood supply for patients."
New campaign blog site
Does anyone know anything about this site?
National Hemophilia Foundation statement on XMRV
This note has been posted on the NHF's Facebook page.
Like the WHF, they contend that XMRV is an enveloped retrovirus and so will be inactivated by existing viral treatment processes.
If this is the case, I wonder why the US 'task force' on the matter has not come out and said the same yet.
The National Hemophilia Foundation is aware of reports concerning the Xenotropic Murine-Leukemia-Virus Related Virus (XMRV) that is being investigated as a possible risk to the blood supply. There are ongoing investigations into whether this virus causes Chronic Fatigue Syndrome and Prostate Cancer. The Canadian Blood Service is deferring individuals with Chronic Fatigue Syndrome due to the unknown issue whether this virus can be transmitted in the blood supply.
This virus is an enveloped retrovirus; this type of virus has been demonstrated to be inactivated through viral inactivation processes (heat-treatment, solvent-detergent) that are employed during the production of clotting factor products. Thus it is highly unlikely that this virus would pose a risk to users of clotting factor concentrates.
NHF is in communication with the FDA regarding their efforts to investigate this issue and will keep the community informed of any new developments.
Another advocacy letter sample
Another sample letter to the media on the Canadian blood ban
Just posted another letter I sent to the Globe and Mail Medical Editor. The letter and all the contact emails etc. can be found at post #111 here: http://www.forums.aboutmecfs.org/sh...d-service-to-ban-CFS-donors&p=66850#post66850
A note on Hemophilia and Rare Blood Disorders organizations
Also an FYI on the hemophilia angle. In Canada at least, the Hemophilia Assoc is intimately involved with the whole National Rare Blood Disorders community. And and I would expect that might be the case in other countries too. So folks receiving various types of blood products (with potentially different levels of protection against XMRV) ARE in contact with hemophilia advocates, and vice versa. The contact for the National Rare Blood Disorders organization in Canada is here: http://www.hemophilia.ca/en/about-t...network-of-rare-blood-disorder-organizations/ . Hosted, as you can see, on the hemophilia.ca website.
You can also try a Google Site Search
Separate names with a comma.