Dear Commissioner,
The European ME Alliance (EMEA) is a grouping of European
organisations that are involved in supporting patients suffering from myalgic
encephalomyelitis (in some countries ME is embraced in the term ME/CFS) and
campaigning for biomedical research to provide treatments and cures for ME. The
alliance consists of members from Belgium, UK, Germany, Ireland, Norway, Spain,
Sweden, Switzerland and Denmark.
As you will be aware, research published in Science magazine in
October 2009 by the Whittemore-Peterson Institute, the National Cancer Institute
and the Cleveland Clinic has shown the possibility of a link between ME/CFS and
a
gammaretrovirus - xenotropic murine
leukemia virus-related virus (XMRV). Further research groups are now actively
engaged in replication and validation studies.
In the meantime, and due
to the possible risk of contamination of blood supplies, sseveral
countries have revised guidelines for ME (ME/CFS) patients. On April 7, 2010,
Canada changed its policy for blood donors with a history or current diagnosis
of ME/CFS, deferring them from donating for two years. Australia’s Red Cross
announced on April 28 that it will indefinitely defer donors with a history or
current diagnosis of ME/CFS. New Zealand has followed Canada's guidelines.
In the United States, the American Association of Blood Banks
(AABB) issued a June 18, 2010 bulletin advising its membership to “actively
discourage potential donors who have been diagnosed by a physician with CFS [In
US also embracing patients with myalgic encephalomyelitis (ME)] from donating
blood or blood components.
On November 1st, 2010, the United Kingdom permanently
deferred donors with a past or current history of ME/CFS. The U.K. National
Health Service indicates that this change brings donor selection guidelines for
ME/CFS into line with other relapsing conditions or neurological conditions of
unknown or uncertain origin, such as MS and Parkinson’s Disease.
In Belgium, the Red Cross has for some time refused to accept
ME/CFS patients as blood donors. They contend that ME/CFS is a disease in full
evolution with a suspicion of an auto-immune component.
In Malta, the National Blood Transfusion Services have been
deferring donors permanently if they have a history of Myalgic Encephalomyelitis
(ME). They state that the reason is not only due to the theoretical risk of
viral transmission but also due to donor safety.
EMEA believe such a prohibition is not only wise but is a
necessary and urgent action to take until more research can be performed.
Otherwise there is a great risk to the safety of blood supplies and to the
health of citizens within Europe.
EMEA therefore request that you support our call to all European
countries to initiate an immediate prohibition of blood donations from people
who have been diagnosed with ME and ME/CFS in Europe, and we look forward to
your statement on this issue.
EMEA would also like to invite you to attend a meeting arranged
by the EMEA around the 6th Invest in ME International ME/CFS
Conference 2010 in Westminster, London, in May 2011 in order to meet with other
health ministers and the leading experts on ME/CFS and to hear of the latest
biomedical research into ME/CFS and experiences in diagnosing and treating
ME/CFS.
This will also be a unique opportunity for Europe's medical
officers to discuss the latest research into this neurological illness that
affects many millions of Europeans.
Once again, we look forward to your statement on the issue of
blood donations by people with ME/CFS in Europe and welcome you to London in
May,
Yours Sincerely,
The
Chairman, Board and Members of the European ME Alliance
European ME Alliance
www.europeanmealliance.org
