Global Campaign to ban blood donations from people with ME

[fred]

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"

 

[fred]

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.

 

[fred]

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.

 

[V99]

Shameless you are Fred

Can't stop the signal

 

[fred]

Australia considers blood ban

It's reported here too.

http://news.ninemsn.com.au/article.aspx?id=1042501

 

[Frickly]

Thanks Fred! I posted this on facebook.

 

[fred]

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

 

[V99]

good find Fred.

 

[creekfeet]

(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?

 

[fred]

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

 

[fred]

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.

 

[fred]

UK organisations to contact

Two organisations to write to in the UK.

NHS Blood and Transplant (NHSBT)
pressoffice@nhsbt.nhs.uk
http://www.nhsbt.nhs.uk/index.html

Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO)
SaBTO@dh.gsi.gov.uk
http://www.dh.gov.uk/ab/SaBTO/DH_088830

 

[fred]

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

 

[fred]

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.

 

[fred]

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

 

[fred]

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.

 

[fred]

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

A group of campaigners who have been fighting for the government to release information on the extent of the spread of vCJD gathered today at no'10 to protest as vCJD continues to claim victims over 10 years after meat products have been branded safe. The families of victims of vCJD gathered alongside campaigner Graham Bell, who was arrested last December. Mr Bell claimed that a local MP of his constituency was offered CJD feed 6 years after it was banned as well as that vital information about CJD has been suppressed from the public. Mr Bell claimed that he obtained evidence of banned feed and of infected meat products still circulating the market, as well as of companies that produce such products operating above the law, which led to his arrest. Another campaigner, Anthony Seaton, whose mother died of CJD claimed that he struggled to obtain his mother's death certificate, who was initially and wrongfully diagnosed as having had a stroke. Mr Seaton claimed that a committee had to congregate to decide upon the release of his mother's death certificate. The campaigners also highlighted the danger of CJD infection by blood transfusion as screening is still insuficient and ineffective. The campaigners then moved on to Parliament Square to protest in front of Parliament.

 

[fred]

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

Date: Fri, 30 Apr 2010 16:52:22 +0100
Reply-To: MEagenda <[log in to unmask]>
Sender: ME/CFS and Fibromyalgia Information Exchange Forum
<[log in to unmask]>
From: MEagenda <[log in to unmask]>
Subject: NOT, ACT: Response from NHS Blood and Transplant
Content-Type: text/plain; charset="iso-8859-1"

From Suzy Chapman

29 April 2010

A member of the public has recently been in correspondence with NHS Blood
and Transplant.

The response received to queries raised in relation to UK blood services
and the protection of blood, organ and tissue supply from XMRV is published
in full, below.

A 13 February compilation posting of blood safety related information and
statements can be found here, on ME agenda:

Donations and transfusions: Safety of the UK blood supply
http://wp.me/p5foE-2ML

Recently published international statements will be posted shortly,
on ME agenda, including this response, below.

---------------------------

Response from NHS Blood and Transplant

Thursday, April 29, 2010 via email

Following your Freedom of Information request to allow reposting of the
NHSBT's response to your query, I can provide you with the following
information. Please note that as outlined below, you are free to use this
information for your own purposes, including any non-commercial research or
news reporting. Our permission is only required for any commercial use of
this information. I'd be obliged if you would let me know where you post
this information.

Your initial query was directed to both our press office and Customer
Services department. The below information is intended as a response to
both of these queries and therefore a separate response will not be sent
from our Customer Services department.

NHS Blood and Transplant would not comment on the blood donor selection
criteria applied by another blood service.

The UK blood services operate in line with the government policy. The
criteria for blood donor selection across all four UK Blood Services are
recommended to the Government by the independent Advisory Committee on the
Safety of Blood, Tissues and Organs (SaBTO).

Current UK guidelines state that people who have previously been diagnosed
with ME are able to donate blood once they have recovered and are feeling
well. There is no set timescale for this, and no additional diagnostic
tests are carried out before they can donate blood.

Any new findings about emerging viruses (such as XMRV) which may have
implications for the blood supply are assessed through the Standing
Advisory Committee on Transfusion Transmitted Infections (SACTTI) and then
consideration given by the Joint United Kingdom Blood Transfusion Services
and National Institute of Biological Standards and Control Professional
Advisory Committee (JPAC) and the Department of Health's independent
Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO).

SACTTI has reviewed a risk assessment on XMRV and blood transfusion, and
the issue was referred to JPAC in November 2009. The JPAC decision was to
keep a watching brief, and evaluate any further research on the subject of
XMRV and chronic fatigue syndrome.

[Ends]

Suzy Chapman
_____________________

[log in to unmask]
http://dxrevisionwatch.wordpress.com
http://meagenda.wordpress.com

For information on the proposed structure of ICD-11, the Content Model and
iCAT, see key documents on ICD-11 Revision site:
https://sites.google.com/site/icd11revision/

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FMS. We take no position on the validity of any specific scientific or
political opinion expressed in Co-Cure posts, and we urge readers to
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[paddygirl]

Irish CMO

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.

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.

 

[fred]

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.