Question 12042 — diseases

Summary

Ms. Christine Cloarec-Le Nabour questions the Minister of Solidarity and Health about the care of patients with myalgic encephalomyelitis, more commonly called chronic fatigue syndrome. Recognized by the World Health Organization as a serious neurological disease since 1992, myalgic encephalomyelitis is an orphan condition which affects between 150 and 300,000 people in France, the majority of whom are women. For the affected people, this syndrome causes many difficulties: great mental and physical fatigue after each effort, even permanent fatigue, pain in the muscles and bones, headaches, short-term memory problems, discomfort after low-intensity effort, or even difficulty concentrating. On May 27, 2018, the first national day of action for the recognition of this disease took place. Organized by an alliance of associations, this event aimed to raise awareness and give visibility to the suffering of patients. It was also a question of promoting biomedical research and clinical trials in favor of this rare disease, without treatment, unknown to caregivers and which puts lives on hold (professional careers stopped, family lives disrupted). Faced with the difficulties encountered in their daily, and in the absence of a health protocol recognized in France, that is to say in the absence of appropriate care and structures, she would like to know how the public authorities plan to support patients and their loved ones.

Machine translation from French. The official text remains authoritative.

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