European Network of Fibromyalgia Associations (ENFA)
On April 12th, the European Network of Fibromyalgia Associations (ENFA) organised “The position of the fibromyalgia patient in society” event in the European Parliament, hosted by Member of the European Parliament (MEP) Takis Hadjigeorgiou.
The meeting was opened by a video message from the MEP Takis Hadjigeorgiou who, because of other obligations, has not been able to attend. The meeting chaired by Souzi Makri, president of ENFA, started with a short introduction on what fibromyalgia is, followed by a presentation by Joop van Griensven, treasurer of ENFA, on the history and achievements of ENFA from the beginning of the organisation.
A Dutch awareness video has been presented, which told the story of a woman with fibromyalgia and her journey to achieve a meaningful life after the diagnosis. The video was subtitled in English and 9 different languages are actually available in subtitles, due to the much appreciated contribution of Grünenthal who intervened with a restricted grant in this project. More info on how to achieve a copy of the video can be found on the website of ENFA www.enfa-europe.eu
Rinie Geenen then treated the subject of the social consequences of fibromyalgia presenting new research data about invalidation of fibromyalgia and more specifically, on the differences shown in that research between different European countries. Strangely enough, the situation in the U.K. seemed to be worse than one might expect, considering their well-respected healthcare system.
Donna Walsh explained in her presentation the relation between Fibromyalgia and the Brain, Mind and Pain interest group, and particularly in relation with the written declaration and the call to action #makeworkwork.
The last presentation came from Steven Bevan and highlighted the relation between work and fibromyalgia. He emphasized that patient associations should make more work in addressing employers to keep people with fibromyalgia employed, as all the research show that working is improving the health condition of Fibromyalgia patients. However, this should be achieved by addressing the patients individually as no patient is the same. All presentations and the video were starting points for long discussions on all the issues ENFA is struggling with for years, the result of the debate being meant to help EFNA developing new targets to address in achieving their goals.
The presentations of the speakers together with some pictures can be found on the website www.enfa-europe.eu