The 3rd Scientific Congress of the International Progressive MS Alliance was held in Toronto in May with the theme ‘Progressive MS – making a difference through rehabilitation and symptom management.’
MS Research Australia is a managing member of this global Alliance which aims to raise the profile, highlight the unmet needs (including strategies to deliver new treatments as well as to enhance wellbeing) and find solutions for people living with progressive MS.
The Congress was an incredibly energetic environment that really hit its goal of getting everyone thinking strategically about how we can collectively enhance research into this field. It set out to understand the perspectives of people living with progressive MS and what is needed to improve their wellbeing and quality of life. It aimed to explore the current state of research and evidence in this area and importantly to learn from other fields of rehabilitation research.
It brought together an inspiring collection of speakers and delegates and provided ample discussion time to deeply explore the themes raised. The topics covered included fatigue management, cognitive rehabilitation, physical rehabilitation and exercise, management of other chronic health conditions, mental health, the biological mechanisms of rehabilitation, and the need for a personalised approach to rehabilitation.
It was incredibly rewarding to see Australian researchers contributing to the discussions and collaborative thinking. Balance and falls researchers Professor Stephen Lord and Dr Phu Hoang, NeuRA, NSW and Dr Anna Hatton, University of Queensland, psychology researcher Dr Litza Kiropoulos, University of Melbourne and heat sensitivity researcher Georgia Chaseling, University of Sydney all presented their work in the poster sessions.
We heard from researchers in stroke and spinal cord injury about the successes and challenges they have faced in the drive to harmonise research in their fields to increase the chances of success. Both the ‘dose’ (or amount) and intensity of an intervention is potentially one of the most important consideration for success along with identifying the optimal window(s) for rehabilitation. The idea of ‘pre-habilitation’ was also discussed with the goal of saving function before it is lost.
How best to harness the property of neuroplasticity, the ability of the brain to ‘rewire’ around areas of damage, was explored along with intriguing discussion of how potential drug treatments that target the biology of plasticity could work synergistically with physical rehabilitation to restore function.
One of the most crucial messages to come from the meeting was the importance of co-designing research studies with people affected by a chronic health condition to maximise success. We need to work together to identify the outcome measures, functions and qualities of life that make a real difference in day to day life.
In the words of Alliance Scientific Steering Committee Chair, Professor Alan Thompson, “we achieved what we set out to do in this unique meeting – we demonstrated excellence in the field, successfully engaged across disease fields and identified the opportunities for the Alliance to make a difference.”
Lay-member of the Scientific Steering Committee, Alexis Donnelly galvanised us all with the quote from George Bernard Shaw – “The reasonable man adapts himself to the world: the unreasonable man persists in trying to adapt the world to himself. Therefore, all progress depends on the unreasonable man.”
There was agreement that we need to continue to be ‘unreasonable’ together to overcome the notion that loss of function is inevitable, and ultimately achieve the best possible outcomes for people with progressive MS.