Health Insurance recently updated the sheet for myalgic encephalomyelitis, or chronic fatigue syndrome, on its website "Ameli.fr", reported Friday August 21 France Inter. This is a first official recognition of this pathology which affects at least 200,000 adults in France, according to Health Insurance, and which is characterized by disabling exhaustion, discomfort after exercise, or even sometimes by cognitive disorders. In accordance with international recommendations and recent scientific data, Health Insurance no longer links myalgic encephalomyelitis (ME) to a psychiatric or psychological disorder.
For Pietro Tomé, president of Afemise, the French association for myalgic encephalomyelitis, this represents a real breakthrough for patients who have often heard "It's in your head", or even "There is nothing", during consultations. According to him, there is a “very strong psychologization of the illness and everything would be explained by a psychological problem”. “All it would take is a little sport, a little effort and a little meditation and things would be much better,” he quips before adding: “It’s really something we suffer from quite centrally in France.”
After the update made by Health Insurance, the Afemise association mentions “important progress” on its site on August 8. “The Ameli Health Insurance website has just published a detailed page on ME/CFS. It notably recognizes post-exercise discomfort as a central symptom, the different levels of severity, the importance of pacing [energy management] and the risks associated with graduated exercise programs.” An “institutional” recognition described as “an important step” by the association which ensures that it continues “to act to obtain French recommendations, training and truly adapted care pathways”.
“Fatigue is not the only symptom”
For her part, Chantal Somm, spokesperson for the Millions Missing France association, an association which works for the visibility and management of the disease, explains that many doctors sometimes find themselves helpless when faced with this disease with multiple symptoms. “It wasn’t just the fatigue that was debilitating,” she confides, “there were also all these cognitive problems, the fact of not being able to stand for long.” “Fatigue is not the only symptom,” repeats the spokesperson.
“You go shopping and you sit on the floor when you get to the checkout because you can't stand up at all.”
The site "Ameli.fr" explains that "myalgic encephalomyelitis/chronic fatigue syndrome is a disease responsible for chronic disabling exhaustion and the occurrence of aggravations after minor efforts". There is currently no treatment that can cure it, "but it is possible to limit the worsening, with daily help, treatment of symptoms and an appropriate pace of activity." Furthermore, this disease is often of infectious origin but its exact cause remains unknown.
Often forced to take sick leave, patients now also hope for administrative recognition of myalgic encephalomyelitis as a long-term condition.
