INTERVIEW – Two to three million people suffer from fibromyalgia in France. But the disease is not recognized. Members of Parliament are working on solutions.
Fibromyalgia is not recognized in France. It is not for lack of patients: it is estimated that 2 to 3 million people are affected in the country. Nor is it for lack of international recognition: the World Health Organization (WHO) classified it as a disease in 1992.
30 deputies seized on May 4 of the file at the National Assembly. The Commission of Inquiry they created sets itself the ambitious objective of highlighting the deficiencies in the care of fibromyalgia patients. The conclusions will be submitted in 6 months. At the head of this working group, MP Patrice Carvalho (Democratic and Republican Left). On the occasion of World Fibromyalgia Day, he looks back on his approach to Why actor.
Why did you propose this commission of inquiry?
Patrice Carvalho: Because I have been dealing with this disease for a few years. The wife of a very close friend has this disease. I was then approached by people working in my sector. They also suffered from fibromyalgia, but did not have the patient status recognized by the Ministry of Health. People are often treated with drugs used in psychiatry.
What is the objective of this commission?
Patrice Carvalho: We want to raise the debate on the problem encountered by people with fibromyalgia, on the obstacle course necessary to find doctors who know this disease and who can refer them to treatment centers. But above all, it is a matter of showing that these patients cannot access ALD or the status of disabled because it is not recognized. It is a national health problem and we are not in a position to offer them solutions, or even to tell them that research is underway.
Who are you planning to meet?
Patrice Carvalho: We plan to go to Belgium where this disease has been recognized for a long time, why not meet the World Health Organization. We must start creating a synergy with the countries which have recognized fibromyalgia and taken action to treat it. I am also in connection with the association Fibro’Actions, who contacted me this year. The goal is to meet everyone, healthcare professionals and researchers in the first place.
Will your conclusions have legislative consequences?
Patrice Carvalho: We are neither doctors nor researchers. I have repaired and maintained machines all my life, but never humans, I told the Assembly. I therefore have no competence in this area and that is not the purpose of the committee. Its goal is to reveal dysfunctions, to issue action proposals for the Ministry of Health and to highlight what exists but which we do not talk about.
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