The position of the fibromyalgia patient in society
“The position of the fibromyalgia patient in society”
Report of European Parliament event April 12th 2017 Hosted by MEP Takis Hadjigeorgiou.
Because of obligations elsewhere the MEP wasn’t able to attend in person but he did made a video to address the attendees on this topic and his personal involvement.
The video can be seen by following this link.
After this introduction Souzi Makri president of ENFA gave a short presentation in which she referred to fibromyalgia’s symptom’s, facts, ENFA’s mission and future aims and goals.
Her presentation can be seen here
The meeting continued with an intervention of Joop van Griensven who spoke about the history of ENFA and their road to this point in time.
His presentation can be seen here.
Then it was time to show the attendees the video “Monique Fibromyalgie”. A Dutch awareness video which with the much appreciated support of Grünenthal was translated and subtitled in 9 languages.
By following this link you may find the video subtitled in your language or a language which is more suitable for you.
De video itself was much appreciated and gave a clear image of the road fibromyalgia patients, but not only they, have to walk before reaching the point the can start with building up a new live with their personal baggage.
Prof. Dr. Rinie Geenen from the university of Utrecht then spoke on the social impact of fibromyalgia; Invalidation. In his talk he addressed the fact that the idea of fibromyalgia patients how they receive the response of other can influence patients health.
His presentation can be found here with some new and interesting data.
After this presentation it was up to Donna Walsh, European Federation of Neurological Associations, to talk about how we can help each other by working together. She referred her to the Brain, Mind and Pain interest group where a lot of the issues raised today and in the video are addressed. Using each other’s strength, collaborate over issues we, people with a chronic disease all experience makes it more interesting for MEP’s and regulatory bodies to work with us.
Donnas’ presentation can be found here.
The last speaker was Prof. Stephen Bevan from the institute of employment studies. He addressed fibromyalgia and employment. He emphasized that good work should be seen as a clinical outcome by doctors. Research shows that good (paid) work helps to improve the situation of the fibromyalgia patient. Off course employers should be able to make adjustments and patient should be able to discuss their personal issues. Also other dimensions should be included. But staying at work including the social contacts and place in society is one of the best medicine’s for fibromyalgia patients who are capable of doing this.
His presentation can be found here.
Al the presentations were followed by lively discussions with good interaction between the attendees. During the discussions it was clear to all that the issue’s which are there for fibromyalgia patients are not limited to them. Many diseases have to find a way to deal with that. Collaboration between organisations to address these topics together seems to be the best way to achieve something.
However we have to keep in mind that it will take a long time before noticeable actions can be seen.