Fibromyalgia: “We do not die, but neither do we live”

INTERVIEW – The path of patient care is not yet organized. A member sounds the alarm. Even if, according to him, doctors are mobilized.

This chilling phrase is perhaps the most powerful of the parliamentary report on fibromyalgia, published 7 months ago, day by day. “We do not die, of course, but we do not live either. With its 20 proposals, the document was discussed. Before falling back into oblivion. On this World Fibromyalgia Day, on May 12, it is clear that the demands of the National Assembly remain a dead letter.

However, the list of suggestions had nothing to do with the magician: to better understand the epidemiology of this disorder, place the most serious cases in long-term conditions (DAL), structure the course of care … To ask for something specific. Review with its main author, the deputy of Oise Patrice Carvalho (Left Front).

Has your report been followed?

Patrice Carvalho   : Coming from Marisol Touraine, not at all. But things are moving in the medical profession. Doctors who really did not understand the disease are starting to get interested. Training has been established that allows doctors to better understand what we are talking about. The pain is so different from one patient to another that it is difficult to diagnose well. I think the report has changed things. We are talking about fibromyalgia and we have brought the disease to the heart of the debate. This helps stimulate thinking.

Two health authorities were seized …

Patrice Carvalho   : I’m really looking forward to the Inserm report (National Institute of Health and Medical Research,  ed  ). When it becomes public, I will ask the new President of the Republic to make fibromyalgia a national cause. It seems essential that the government take care of it. Marisol Touraine, in her obstinacy for not increasing expenses, did not want to talk about the disease but only about the pain.

What are the priorities?

Patrice Carvalho   : As soon as the Minister of Health is appointed, I want to meet with him so that things move. We made a report, we approved amendments. But all this remains a dead letter. Fibromyalgia does not understand why laws are not enacted. It is necessary to communicate with patients, to be consoled. Patients need a state, such as people with diabetes or cancer. Where things have progressed the most is in pain centers. The solution is there: the path of care must be structured. While the medical profession remains ignorant, things will not work.

Your report highlighted the high cost of fibromyalgia

Patrice Carvalho   : yes. People take a lot of medicine without knowing if it is adequate. Some use drugs for psychiatry, others use analgesics. It will not be without effect in the future. You have to approach things differently. If we do not find remedies, it will be worse and worse. Today we have a short-term vision. But 2 million people are affected. And some doctors still do not know the disease, while those of Social Security refuse to recognize it and reject work stoppages. It is a real pain.

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