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Global Campaign to ban blood donations from people with ME

Discussion in 'Action Alerts and Advocacy' started by fred, Apr 8, 2010.

  1. fred

    fred The game is afoot

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    Australian blood banks

    This was posted on the WPI's Facebook page (post starts after the URL).

    http://www.facebook.com/home.php?sk=lf#!/pages/Whittemore-Peterson-Institute/154801179671?ref=ts

    I emailed the Aust blood banks in all states of Australia in reference to Canada banning CFS patients from donating blood due to the risk of XMRV. I suggested that Australia should be doing the same. This is a reply I have just received:

    "Dear Ms MacDonald,
    Thank you for your email. The Australian Red Cross Blood Service is indeed aware of this issue and the Canadian Blood Service's recent response. The implications of this virus and its relevance to the blood supply are currently under consideration.

    Yours sincerely,

    Dr Anthony Keller
    National Donor & Product Safety Specialist

    Australian Red Cross Blood Service"
     
  2. fred

    fred The game is afoot

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    High Court finds against UK Government in blood contamination case

    This is news of an important victory for UK citizens who were infected with HIV, Hep C, etc. from contaminated blood in the 80/90s.

    This is the same contamination scandal for which Canada 'paid up' (and prevention of a repeat situation is suggested as the reason for the recent ban on donations from ME patients). Eire paid up too (c. 800k per person). The UK Government, however, has never accepted liability and so any compensation paid to victims has been ex gratia and informal.

    If the Government has been able to get away with shirking their responsibility for HIV/Hep C contamination for so long, no wonder they haven't really cared about XMRV.

    If this judicial review leads to compensation being formalised, then there will be a precedent for people infected with XMRV via contaminated blood transfusion and then, perhaps, the UK Government may follow Canadia's lead. But it's a big maybe.

    http://www.taintedblood.info/news.php?mode=article&newsid=152

    [Quote starts]

    On the eve of World Haemophilia Day, it gives us great pleasure to be able to inform the community of victims to contaminated blood that the Judicial Review brought by Andrew March on behalf of TaintedBlood has been successful. The Government's decision of 20th May 2009 not to accept the Archer Report's recommendation 6(h) has been quashed by the court.

    We are now in a new phase of history where the Government can no longer rely on their erroneous distinction between the alleged 'fault-based' compensation scheme of Ireland and their own ex gratia scheme in the United Kingdom. No such distinction exists and can no longer be used as a justification for not awarding substantial ‘life-changing’ compensation in the UK. The High Court has now clarified the situation and has shown that the Government's reasoning does not withstand scrutiny.

    We have to pose the question as to why we had to go the lengths of a judicial review in order to force Government to take this issue seriously? It insults our intelligence that Government continued to maintain (right up to trial) that the Irish compensation was fault-based and implemented due to findings of fault.

    The Government will now have to reconsider their original decision and re-make it based on a lawful and factual basis. This time we would ask that they refrain from taking such a cavalier attitude to such a crucial question. They may well arrive at the same decision - not to implement recommendation 6(h), however, this time, they must give sincere reasons which must withstand the scrutiny of public law. A little humility from the Government would not go amiss!

    It is very important that all those affected by contaminated blood and blood products remember that this not a platform for forcing the Government to provide adequate compensation, but it is, however, an important step in the campaign, since we have effectively removed a major stumbling block in the process of working toward a full and final settlement and we have set the record straight on what should meaningfully be taken from the Irish model.
     
  3. fred

    fred The game is afoot

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    Australia considers ban on blood donations from people with ME

    I am shamelessly bumping this up the forum and also shamelessly repeating V99's post about the Australian Red Cross considering a ban on blood donations from people with ME.

    For those who may have emailed info about the Canadian ban to contacts listed in this thread, you might also wish to follow up with this news too.

    http://www.theaustralian.com.au/new...ood-donor-review/story-fn3dxity-1225856015325

    [Excerpt starts]

    AUSTRALIA'S Red Cross Blood Service is reviewing its donation guidelines following Canada's move to halt donations from people who have ever had chronic fatigue syndrome (CFS).

    Canadian authorities took the precautionary step earlier this month, based on US research that linked CFS to a recently identified virus (XMRV) which would be transmissible via infected blood.
     
  4. V99

    V99 *****

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    UK
    Shameless you are Fred ;)

    Can't stop the signal
     
  5. fred

    fred The game is afoot

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  6. Frickly

    Frickly Senior Member

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    Texas
    Thanks Fred! I posted this on facebook.
     
  7. fred

    fred The game is afoot

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    Thanks, frickly, to you too. This one is dear to my heart.
     
  8. V99

    V99 *****

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    UK
    good find Fred.
     
  9. creekfeet

    creekfeet Sockfeet

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    Eastern High Sierra
    (bumpish post)
    I also repeated the info about Australia on Facebook---and previously, the article on Canada's ban.
    Maybe emails about blood bank action should go out to the XMRV action list?
     
  10. fred

    fred The game is afoot

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    Link to AABB update

    Here's the PR thread with the latest statement from the AABB. It doesn't ban people with 'CFS' from giving blood but it does ban people who are XMRV positive.

    http://www.forums.aboutmecfs.org/showthread.php?4494-New-XMRV-Fact-Sheet-from-AABB&p=71439#post71439

    [Excerpt starts]

    Pending the availability of further data, prudent practice would be indefinite deferral of donors who have received a diagnosis of XMRV infection.

    http://www.aabb.org/documents/About_Blood/EID/xmrvfactsheet.pdf
     
  11. fred

    fred The game is afoot

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    New Zealand plans to ban blood donations from people with CFS

    http://www.voxy.co.nz/national/chronic-fatigue-set-disqualify-blood-donors/5/45805

    [Excerpt starts]

    Wellington, April 21 NZPA - New Zealand's blood banks plan to reject donors with a record of chronic fatigue syndrome (CFS).

    The move follows research overseas which has raised concerns about the potential for a recently identified virus XMRV to spread through blood transfusions.

    [Excerpt ends]

    Also here.

    http://www.stuff.co.nz/national/health/3607226/Chronic-fatigue-donors-face-rejection

    Now we have Canada and New Zealand; Australia thinking about it; and the AABB banning people who are XMRV positive.

    What is happening in YOUR country? Why not write to your blood services and your hemophilia/blood disorders organisations, send them the links to this information and ask them for their response?

    The more awareness we can build of XMRV and its potential risks to the blood supply, the more chance we have of getting research $ spent on it.
     
  12. fred

    fred The game is afoot

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  13. fred

    fred The game is afoot

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    England and North Wales Blood Service

    This address will save you having to plough through their on-line contact form. They obviously like to make it hard to contact them ;)

    customer.services@nbs.nhs.uk
     
  14. fred

    fred The game is afoot

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    Australia formalises its ban on blood donations from people with ME

    http://www.donateblood.com.au/news-detail.aspx?IDDataTreeMenu=33&ID=390

    [Excerpt starts]

    The Australian Red Cross Blood Service will indefinitely defer donors who have been diagnosed with Chronic Fatigue Syndrome (CFS).

    This follows recent research, describing a possible link between chronic fatigue, and a retrovirus called Xenotropic Murine leukaemia virus-related Virus (XMRV).

    As the Blood Service currently defers donors who have CFS, this change will delay their return to donating until there is more scientific literature on the possible viral link.

    The number one priority of the Blood Service remains the safety of Australias blood supply.
     
  15. fred

    fred The game is afoot

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    European ME Alliance calls for ban on blood donations from people with ME

    http://www.euro-me.org/news-Q22010-005.htm

    [Excerpt begins]

    After Canada, Australia and (in all probability) New Zealand have prohibited people who have been diagnosed with ME/CFS from donating blood the European ME Alliance (EMEA) has written to European health ministers and Chief Medical officers requesting that a similar ban be placed in European countries. EMEA have also requested more funding for biomedical research into ME/CFS and again invited Health ministers and Chief Medical Officers in Europe to a meeting in London on 23rd May 2010 to discuss ME/CFS.

    Belgium Geneesheer-Directeur Generaal
    Denmark Direktr Sundhedsstyrelsen
    Finland Minister of Social Affairs and Health
    France La Ministre de la sant et des sports
    Germany Bundesgesundheitsminister
    Holland Minister of Health, Welfare and Sport
    Ireland Chief Medical Officer
    Italy Ministero della Salute
    Norway Minister of Health and Care Services
    Spain Ministerio de Sanidad y Poltica Social
    Sweden Minister of Health
    Switzerland Direktor des Bundesamtes fr Gesundheit BAG
    UK Chief Medical Officer
    European Commission European Commissioner for Health
     
  16. fred

    fred The game is afoot

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    Irish blood transfusion service

    Here's a contact to ask about whether the IBTS is going to make a statement about XMRV and blood donations from people with ME.

    david.burbridge@ibts.ie

    EDIT: I have never received a reply from this man. No manners.
     
  17. fred

    fred The game is afoot

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    Families of CJD victims take protest to the Prime minister

    From the Demotix bogsite. Will this be XMRV in x years time? My emphasis.

    http://www.demotix.com/news/321328/families-cjd-victims-take-protest-prime-minister

     
  18. fred

    fred The game is afoot

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    Statement from UK NHS Blood and Transplant

    From Co-Cure.

    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1004E&L=co-cure&P=R805

     
  19. paddygirl

    paddygirl Senior Member

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    Irish CMO

    Just had a long conversation with a woman who knows our CMO. I'll fill her in tomorrow.

    Already burnt her ear for an hour about ME politics, but didn't read all this til tonight.
     
  20. fred

    fred The game is afoot

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    Thanks, paddygirl. I strongly believe that 'blood' is one of the angles that can bring XMRV to its tipping point, much the way it did with HIV.

    I am also looking forward (if that is an appropriate sentiment) to the findings of the WPI blood transfusion study. It would put increased pressure on the governments of the world it it were proven that people have contracted XMRV through blood transfusions.
     

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