SIP 2017 - Key Statement
Carole Robert – Fibromyalgie France, France
"For 20% of the population, chronic pain is a source of disability and major deterioration in the quality of life. Chronic pain leads to a significant consumption of health care and work stoppages, which have a heavy impact on health systems and have a profound impact on family, vocational, educational and social life."
Carole Robert is co-founder and president of the national association Fibromyalgie France, founded in April 2001. She has been suffering from chronic pain for 50 years after a major infectious episode at the age of 15, diagnosed with fibromyalgia only in 1998.
Since 2001, she has been committed to associative action to recognize fibromyalgia at the institutional, medical and social levels. In fact, she was interviewed by the European Network of Fibromyalgia Associations (ENFA) in 2008 as a public affairs officer at the Council of Europe to present “living with fibromyalgia”.
At the level of France, she worked with the team of volunteers for recognition of fibromyalgia at the level of the National Academy of Medicine and the High Authority of Health. More recently, the association Fibromyalgie France has obtained a collective assessment on fibromyalgia by INSERM (National Institute of Health and Medical Research).
This expertise will be published mid-2018. The association regularly conducts national surveys, for example concerning “Loss of autonomy and quality of life of the chronic pain fibromyalgia”, “habits, behavior, beliefs about the drug”.
Fibromyalgia France is a partner of SFETD (French Society for the Study and Treatment of Pain) and intervenes during the annual congress. Carole Robert also works at the University as part of the continuing education of health professionals on “living with chronic pain”. Joint meetings are held at the Ministry of Health. A book was written in partnership with a rheumatologist and a health historian “Fibromyalgia, so long a road”.
As part of the French “Loi de Santé”, the administrators of Fibromyalgie France are representatives of users (patients) in healthcare institutions (hospitals - ministries, etc ...) and are also trained at the ETP (Therapeutic Education of the Patient).