This letter has been slightly edited and is not an exact copy of the original document. The letter is dated the 19th December 2006.
Commission européenne, L-2920 Luxembourg. Telephone: (352) 43 01-1.
Office: HITEC 01/196. Telephone: direct line (352) 43 01-34658. Fax: (352) 43 01-32059.
HEALTH & CONSUMER PROTECTION DIRECTORATE-GENERAL
Directorate C - Public Health and Risk Assessment
C2 - Health information
Subject: Myalgic Encephalomyelitis in Swedish health and care system
Ref.: Your letter received on 01 December 2006
Thank you for your letter from 05.12 and for the description of the situation of patients with Myalgic Encephalomyelitis. The European Commission and its Directorate General for Health and Consumer Protection is aware of those problems. Most competence for action in the field of health lies within the Member States but the EU has the responsibility, set out in the Treaty, to undertake certain actions which complement the work done by Member States.
Myalgic Encephalomyelitis is classified as a rare disease and for those the European Commission develops special programmes, covering research and public health action but also legislation on orphan drugs.
The low-prevalence of the diseases such as Myalgic Encephalomyelitis and the lack of information, research, diagnosis, treatment and expert availability may mean that people affected do not benefit from the health resources and services they need.
In the framework of information policy, the Directorate General for Health and Consumer Protection provides information about rare diseases on its web site and on the newly launched Health-EU Portal (the official public health portal of the European Union). Here are the links to the above-mentioned websites:
The Directorate General for Health and Consumer Protection has co-funded many projects in the field of rare diseases. One of them is Orphanet which is dedicated to spreading information on different rare diseases in health professionals and patients. You can find more information on the website . On this site, you can also find information about Myalgic Encephalomyelitis.
If you have any other questions do not hesitate to ask me.
John F Ryan
Head of Unit