Question 15430 — diseases

Summary

Mr. Matthieu Bloch questions the Minister of Health, Families, Autonomy and People with Disabilities on the particularly worrying situation of people suffering from myalgic encephalomyelitis. This neurological pathology, recognized by the World Health Organization since 1969, still remains largely unknown in France, both in the medical world and in treatment pathways. Many patients and their Families thus denounce a glaring lack of training for health professionals, an absence of sufficient specialized structures as well as major difficulties in accessing diagnosis and care. In its most severe forms, this disease plunges patients into a state of extreme and permanent exhaustion, sometimes forcing them to remain permanently bedridden, in darkness and silence, due to an acute intolerance to light, noise or the slightest physical and cognitive effort. The post-exertion discomfort characteristic of this condition causes a considerable deterioration in the quality of life, which can lead to total social isolation and profound psychological distress for both patients and their caregivers. Several families also warn of the delay taken by France in terms of research, recognition institutional and structuring of care pathways, in comparison with other European or North American countries. They emphasize that the extreme scarcity of specialists and the absence of suitable therapeutic solutions leave many patients without effective care. On the occasion of World Myalgic Encephalomyelitis Day, celebrated on May 12, he asked what measures the Government intends undertake to improve the recognition of this pathology, strengthen the training of health professionals, structure a real care system throughout the territory and more actively support medical research dedicated to this particularly debilitating disease.

Machine translation from French. The official text remains authoritative.

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