Bratislava, Slovakia was the setting for my first European Multiple Sclerosis Platform (EMSP) Spring conference. The theme was MS research, the tagline promising ‘cutting edge research with a patient-centred approach’. On my arrival in balmy and beautiful Bratislava, I had a Google maps-themed adventure getting to my hotel, complicated by my complete lack of any sense of direction. On the plus side, I got some beautiful views of the castle as I dragged my suitcase around the windy cobbled streets. Cue the mother of all naps once I arrived in my hotel room!
I woke refreshed and, with my lanyard swinging from my neck, was ready to see what the conference had to offer. Friday morning began with a crash course in clinical trials. Dr Marleen Verbeeck eloquently explained the clinical trials process that each of our disease modifying drugs (DMD’s) has undergone; from basic science to patient administration I think she detailed the process concisely and effectively using an interactive presentation. This talk was followed by the official opening of the conference by the outgoing EMSP president and fellow Irish woman, Anne Winslow. She reminded us that this year’s focus on research was reflective of recent developments including the first European licensing of a drug to treat early stage Primary Progressive MS (PPMS). We then received a sincere and warm welcome from the new EMSP President, Pedro Carrascal from Spain.
A real highlight for me on Friday was the presentation by Professor Alan Thompson (University College London) on recent developments and MS research. He alluded to a number of Scandinavian countries with existing patient registries dating as far back as the 1950’s. These databases have provided a wealth of information on this patient cohort. Data from this registry in Denmark has highlighted an increase in the diagnosis of late onset MS (age 50-64) and an increase in the number of women being diagnosed with MS. The concept of a patient registry reminds me of a phrase in business which states that ‘we can only manage what we monitor’.
In Ireland there isn’t an MS patient register. How can we manage our MS patient population on a national level and predict the kind of resources and facilities that these patients will require if we don’t know anything about numbers or effects? It really struck me just how much Ireland could learn from Scandinavian nations and their approach to MS patient care. Having travelled from my hometown of Dublin, Ireland, I was eager to hear MS Ireland’s Harriet Doig presentation The role of patients in shaping the research agenda. It was promising to see MS Ireland using surveys as an inexpensive and effective research tool. This has enabled MS Ireland to really pinpoint the concerns and needs of the patients it represents.
The highlight of the afternoon session was a fascinating talk on genetics and environmental factors in MS presented by Professor Lars Alfredsson. He reiterated a number of well-publicised MS risk factors such as low levels of Vitamin D, Epstein-Barr virus (EBV), smoking and obesity in adolescence. He pointed out that when an individual is exposed to 2 of these risk factors, an interaction effect is observed. Essentially the two risk factors interact with each other and amplify the risk of developing MS. For example, we see this effect in smokers who lack the genetic elements which protect against developing MS. Likewise, this effect has been observed when patients, whose genetic makeup predisposes them to developing MS, are subsequently infected with EBV. The interaction effect reiterates the fact that MS is a two-hit disease; one genetic factor is usually compounded by an environmental hit.
The first day closed with an interesting talk on gut microbiota and MS which lead nicely to the gala dinner. I was thrilled to sit at a lively table surrounded by the wonderful ladies from MS Society of Malta. We were treated to an evening of fabulous food and local Slovakian music played by a family band. Although I can barely pronounce the names of the instruments and won’t even attempt to spell their names, it was a thoroughly enjoyable evening
Day two of the conference featured two standout sessions. The first of which was a panel discussion moderated by Nicola Bedlington, Director, European Patients’ Forum. The session was intended to discuss access to medicines but soon became an opportunity for the audience to discuss patient care in each of our respective countries. It was a chance to really see which countries are making strides in MS patient care and which areas we can improve in nationally.
The final session of the event was possibly one of my favourite and really ended the conference with a bang! Three people living with MS shared their own individual stories during a segment called “Just doing it: Life with MS”. Greek plastic surgeon Panagiotis Milothridis really inspired me with his talk. I absolutely love people who take a preconceived stereotype and flip it on its head. Instead of being the person with MS needing a doctor, he IS the doctor! He spoke of his charity work with Operation Smile, how he treats children and adults living in in developing countries who have cleft-lip and/or palate. Joanna La Rosa from Malta spoke about how she courageously faced all the challenges that life has thrown her way. She uses her passion for craft work to remind us to cultivate interests and hobbies to keep us going through our own struggles. Finally, Michelle Reid from the UK spoke of her long journey to reach an eventual MS diagnosis and the importance of representation of people from black, minority and ethnic communities in the MS community. She has used her diagnosis for the betterment of others and has created a youth group in her area called Be Calm (Instagram BeCalm) which aims to teach teenagers about healthy habits in body and mind.
When I try to summarise how I feel about the conference overall, I’m reminded of the interaction effect that Professor Thompson spoke of. Individually, each of us facing MS will struggle at times. Not every day is an uphill climb, but each day features some small reminder of this awful condition. However, when we come together as a group of people with MS, the sum is greater than each individual part. When we come together and interact as a group, we display more courage, strength and dynamism than each of us could individually possess on our own. I left the conference with a renewed hope that one day, living with MS may not be as much of a struggle as it sometimes feels. I left with new friends, fresh ideas and even an invite to see the ladies of MS Society Malta in their hometown. I left the event already looking forward to the next one!