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Parliamentary questions
19 March 2013
Question for written answer
to the Commission
Rule 117
Willy Meyer (GUE/NGL)

 Subject:  Myalgic encephalomyelitis

In the European Union, more and more people are affected by myalgic encephalomyelitis (ME), often wrongfully described as chronic fatigue syndrome (CFS). This disease has no curative treatment. In the international scientific community, the disease is classified as a severe neurological illness, while CFS is an interweaving term that creates confusion and problems for patients, as was admitted, in 2009, by former Commissioner for Health Androulla Vassiliou.

People suffering from ME find themselves completely helpless in this situation, because they not only suffer the painful consequences, but are also wrongly treated as mentally ill by the public health systems or denied access to medical services. Several children have been taken by force and put in a psychiatric hospital where they do not receive tailor-made biomedical treatment. Sophia, from the UK, died. Karina, from Denmark, has been sectioned. And there are several more. There are thousands of European citizens who are abandoned due to ignorance of this disease and lack of treatment options. Some patients have even resorted to suicide as a means to escape the pain and suffering. This situation exists in all of Europe. This is why it is necessary to adapt legislation so that all European patients are protected and the Member States cannot evade their responsibility by denying the existence of this disease. The international scientific community, which has made significant progress in the diagnosis and evaluation of ME, has not yet found a curative treatment. Some of the patients become so sick that they are bedridden, tube-fed, in constant pain and exhaustion, with infections, allergies, intolerance to light and noise, inflammation and neuro-endocrine anomalies. They are the sickest of the sickest.

The national health systems of the Member States have to respect the World Health Organisation’s ICD-10 classification G 93.3 for ME or myalgic encephalomyelitis and their respective lists of diseases on the basis of the ILO list, and in accordance with the classification. Endorsement is imperative, solely to protect the rights of people with this disease. A study showed that ME patients die 25 years too soon.

Does the Commission endorse that myalgic encephalomyelitis must be acknowledged as a (double) neurological illness in the respective Member States in order to avoid confusion?

Does the Commission support the implementation of the Canadian Consensus Criteria 2003/ICC 2013 in the Member States for diagnosis of ME?

Does the Commission support biomedical research into ME financially and respect these patients’ rights?

 OJ C 11 E, 15/01/2014
Last updated: 4 April 2013Legal notice