Attention: From Mr or madam the future President of the Republic
“Fibromyalgia is a disturbance of the modulation of the pathways of pain, a complex system: the brain, hypersensitive to all stimulations, fails to inhibit the pain, which diffuses.” Professor Serge Perrot.
We are going ahead with a humanitarian catastrophe.
May 12 represents the anniversary date of patients suffering from fibromyalgia, a disabling, debilitating and excessively painful pathology, which yet France still does not take into consideration.
Despite the existence of evidence, its official recognition and actual management in 2017 remain inoperative. It would depend, in part, on the results of the collective expertise of INSERM, expected at the end of 2018.
And all the while, the sick suffer, and the knowledge of pathology tramples, for lack of basic research.
This day represents the International day for the fight against Fibromyalgia, the beginning of which dates back to the early nineteenth century.
• This pathology is officially recognized as a disease by O. M. S since 1992 and is listed in C.I. M 10 under the number M 79.7, since 2006.
• In 2009, the European Parliament adopted a declaration to ensure that this syndrome is recognised as a full-blown disease.
• The number of people affected is increasing rapidly, with men now being diagnosed on two, when it was only one in 13 a decade ago. Children, even very young people suffer.
• These patients have no hope of healing to date. The report of the Commission of Inquiry on Fibromyalgia of 2016 states that: according to the Directorate General of Health, between 2% to 5% of the French population would be affected.
Fibromyalgia is not a rare disease. Yet she is the poor parent of health.
How many more suicides will be needed before a real care is taken?
Considering this, we ask:
• The taking into account of Fibromyalgia as a disease that can be disabling and not as a syndrome, thus allowing:
◦ Relieving the sick, misunderstood to date,
◦ provide a framework for their pain and fatigue,
◦ recognize their ailments.
• The training of physicians, a real issue in the coming years, to obtain a faster diagnosis by an increase in the duration of the teachings, in particular the chapter pain.
• The rapid development of a common guide for all medical personnel, in the form of recommendations from the High Health authority defining the modalities for the management of the disease.
• Clinical research on the causes and determinants of Fibromyalgia syndrome, integrating a large cohort of patients.
• A census of patients with fibromyalgia, encouraged by the mandatory codification of the acts of treating physicians to differentiate them from those treated for depression.
• The end of the current, catastrophic medical wandering. Six years, on average, before the diagnosis of Fibromyalgia was diagnosed.
All necessary exams must be carried out over a very short period of time and include the involvement of the internal medicine services.
Minor forms must be detected quickly at this stage, followed by a support to limit the worsening of the patient’s condition.
• Obtaining the ALD
Today, the processing of ALD-31 applications does not respect the principle of equality, and creates glaring geographical disparities. It results from uncoordinated decisions of doctors-councils, or most often of their goodwill.
• Identical treatment throughout the territory of requests made to the departmental houses of persons with disabilities.
• A broad information campaign on Fibromyalgia should be conducted, as soon as possible, by the Government to:
◦ Promote a better understanding of this pathology,
◦ Limiting the incomprehension that it still arouses,
◦ Stop the loss of the social or professional relationship, aggravating factors of the condition of the sick.
• A census and management of so-called alternative medicines: there is an urgent need to focus on gentle methods that provide at least as important a relief to patients.
• The development of therapeutic education programs to improve current care.
• The provision of additional credits to specialized structures in the treatment of pain, to equip the pain Centres with increased resources in personnel and materials, for a satisfactory multidisciplinary management.
• More effective Prevention medicine,
The search for retention in employment is paramount in this affection. Professional medicine should focus on reclassifications and adaptations of the workstation. The generalization of teleworking must be sought. This would avoid difficult financial and social situations.
• The necessary inclusion of Fibromyalgia on the list of pathologies entitling to long-term leave, long term leave,
• The fastest possible care for children with fibromyalgia,
• The development by the High health authority of a comprehensive care basket, which is supported by Medicare, including non-medicated therapies.
• Reimbursement of the costs remaining for the patients in the context of the spa cures,
• The possibility of having access to therapeutic cannabis, in order to improve the quality of life in the absence of any effective long-term medicinal treatment available.
The Association hopes that the work of the parliamentary committee of inquiry into fibromyalgia does not remain a dead letter.