The conference, titled “Social Media – a new tool for the work of MS patient advocates and MS professionals”, took place from 24-25 November 2012, and was the first time RIMS and EMSP had collaborated on a conference together.
For two days, people from MS organisations and individuals with, or interested in, MS across Europe came together in the beautiful city of Prague to learn about and discuss the possibilities and potential of social media and apps when applied to MS.
The conference highlighted the inevitable importance of gaming technology, applications and social networking, accessible through computers and smart phones, to our every day lives and the exciting potential to support people with MS to improve the quality of their lives. Today, many people with MS are not only comfortable with, but reliant on this technology, and it can provide a genuine opportunity for innovation that can generate improvements in quality of life.
A photo from the EMSP "Under Pressure" exhibition, on display at the conference
The European MS Platform (EMSP) is the umbrella organisation for 38 MS societies from 34 European countries. EMSP represents their interests at the European level and work to achieve its goals of high quality equitable treatment and support for people with MS. There are currently approx. 600,000 people diagnosed with MS in Europe. So far, no cure has been found.
Rehabilitation in Multiple Sclerosis (RIMS), aims to link health care professionals in European MS Centres and other settings, as well as researchers, in order to encourage professionals interested in MS to exchange their knowledge of clinical, scientific, social, economic and educational matters about the disease and to establish individual and scientific contacts between persons.
The conference was opened by John Golding, the President of EMSP and a Board Member of MSIF. Ceri Angood (MSIF's Director of Programmes) and Ayesha Ali (MSIF's Campaigns Manager) attended the conference. Ayesha said "It was a great way to learn more about how we might be able to improve our social media in 2013, as well as being an opportunity for us to catch up with our MS colleagues from around the world."
Isabella Baroni from Italian MS Society (AISM) on how they successfully used social media in their ‘red’ campaign.
Dr. Matt Jameson Evans, Chairman, HealthUnlocked presented on how to facilitate social networks for people with MS and discussed the value of social networking for peer support. Shared information and a sense of support can reduce the isolation and fear of people facing chronic conditions.
Dorothea Pitschnau-Michel and Adam Michel from the German National MS Society (DMSG) presented an application whereby people with MS can track their symptoms such as fatigue, exercise, diet and effects from treatments and use this in consultation with their doctor, putting power in the hands of the patient.
Pedro Carrascal, CEO MS Society of Spain (FELEM), introduced X-Box supported rehabilitation for people with MS, using the concepts of the highly successful gaming industry to make physio exercises fun and to enable patients to do this in the comfort of their own home.
Peter Feys, Professor of Rehabilitation and Physiotherapy, PHL/University of Hasselt, RIMS President, Belgium, introduced both RIMS and the idea of a multi-center collaboration on Walking Assessment.
Paul van Asch, Physiotherapist, Fit Up Team, Kontich, Belgium presented Sportive challenges in MS and promotion by using social media.
Vicki Matthews, MS Specialist Nurse Advisor to the MS Trust, UK, presented MS-NEED, an online training course for nurses across Europe to take steps to becoming MS Nurse specialists.
Thomas Henze, Neurologist, Passauer Wolf Neurological Rehabilitation Centre Nittenau, Germany, presented on recommendations for rehabilitation in people with MS.
Kamila Rasova, Physiotherapist, Charles University, Czech Republic introduced participants to an online survey on the content of physical rehabilitation.
Alessandra Solari, Neurologist, Neurological Institute C. Besta, Milan, rounded the two days up succinctly with reference to shared decision making in MS by using digital media.