Willy Meyer MEP asks the EU to improve diagnosis and recognition of ME

[maryb]

Willy Meyer asks the European Commission
to improve the diagnosis and recognition of Myalgic Encephalomyelitis.


03/22/2013

Willy Meyer asks the European Commission to exercise powers in the area of healthcare at European level to ensure that the health systems of the EU Member States employ procedures for proper diagnosis and that they not longer confuse Encephalomyelitis Myalgic with Chronic Fatigue Syndrome.

Myalgic Encephalomyelitis is classified by to the international scientific community as a serious neurological disease, however the Chronic Fatigue Syndrome [CFS] is an undefined concept that can lead to errors in diagnosis.

In 2009 the Commissioner of the Department of Health Androulla Vassiliou admitted that this term [CFS, FT] could lead to confusion and problems for patients, yet little progress has been made in correcting these diagnoses.

People affected by Myalgic Encephalomyelitis are in a desperate situation of helplessness due to continuous misdiagnosis mistakenly qualifying their illness as a psychological problem rather than a neurological disease.

"The public health systems of the Member States must ensure by all means at heir disposal an accurate diagnosis of all diseases recognized by the international scientific community, any error in this step has serious consequences for those affected," said the European member of the Spanish communist party Izquierda Unida, referring to the victims of this disease.

The parliamentary question Meyer points out the need for Member States to implement the Canadian Consensus 2003/ICC 2013-criteria for effective diagnosis of Myalgic Encephalomyelitis, and also emphasizes that the European Commission should make funds available to enable biomedical research to improve diagnostic techniques and treatment options for this very serious neurological disease improve./span>

The European Commission should also be aware that the EU Member States cannot violate international agreements which oblige the acknowledged diseases to be acknowledged; the World Health Organization acknowledges this disease [ME, FT] in its International Classification of Diseases.

The International Labour Organization acknowledges this disease, which implies that any erroneous diagnosis of this disease is a violation of the agreements that were reached within these two institutions.

 

[snowathlete]

Good. We need to push for appropriate diagnosis and recognition.

 

[Battery Muncher]

Great to hear it!

I've now skim read the actual question he put forward, and I think it's pretty good.

EDIT: here is the link to his written question

http://www.europarl.europa.eu/sides/getDoc.do?type=WQ&reference=E-2013-003090&format=XML&language=EN

Parliamentary questions
19 March 2013
E-003090-13
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?