December 2010 |
The members of the European ME Alliance have written to Europe's health ministers renewing our earlier call for a total ban on people with ME within Europe from donating blood. Following a ban being implemented by Canada, Australia and New Zealand and, following the news that the UK and Malta have now banned blood donations from people with ME (a permanent ban in the case of the UK), EMEA feel it is urgently required for all of Europe's health ministers to consider taking the same action.
Our press release is available here.
EMEA have also invited health ministers and Chief Medical Officers in Europe to a meeting in London in May 2011 to discuss ME/CFS.
Letters have been sent to -
| Belgium | Geneesheer-Directeur Generaal |
| Denmark | Direktør Sundhedsstyrelsen |
| Finland | Minister of Social Affairs and Health |
| France | La Ministre de la santé 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 Política Social |
| Sweden | Minister of Health |
| Switzerland |
Direktor des Bundesamtes für Gesundheit BAG |
| England |
Chief Medical Officer |
| Scotland | Cabinet Secretary for Health and Wellbeing |
| European Commission | European Commissioner for Health |
We invite all European support groups, patients, carers, healthcare staff and others who wish to see progress support us in this initiative. Please write to your health minister or Chief Medical Officers, quoting this letter, and ask them to support our request and attend the London meeting and the conference.
The EMEA letter to the European Commissioner for Health is as follows-
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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,
European ME Alliance
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Replies:
We shall post the replies we receive here as and when they arrive.
Further Links:
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome - click here
More details on the original research published in Science magazine - click here.
Documented involvement of Viruses in ME/CFS - click here
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Last Update: 04 December 2010 |