Dear Minister,
The European ME Alliance (EMEA) is a grouping of European
organisations that are involved in supporting patients suffering from myalgic
encephalomyelitis (ME/CFS) and campaigning for biomedical research to provide
treatments and cures for ME/CFS. The alliance consists of members from Belgium,
Denmark, Germany, Ireland, Norway, Spain, Sweden, Switzerland and the UK.
As you know recent research published in Science magazine 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).
Due
to the possible risk of contamination of blood supplies the Canadian Blood
Service recently prohibited blood donations from people who have ME/CFS or have
had ME/CFS. The
Australian
Red Cross Blood Service has also indefinitely deferred donors who have been
diagnosed with ME/CFS.
New Zealand is considering following this lead.
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 initiate an immediate prohibition
of blood donations from people who have been diagnosed with ME/CFS in Europe
and allocate funding for further biomedical research into ME/CFS.
EMEA also ask you to reconsider the invitation made by EMEA to
meet with us and other European health ministers/Chief Medical Officers on 23rd
May in London and to attend the 5th Invest in ME International ME/CFS
Conference 2010 in Westminster, London, on 24th May in order to meet
with 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 be a
unique opportunity for Europe's medical officers to discuss the latest research
into this neurological illness that affects many millions of Europeans.
We look forward to your statement on the issue of blood donations
by people with ME/CFS and welcome you to London in May,
Yours Sincerely,
