Making a difference through rehab research at the Progressive MS Alliance Conference

The 3rd Scientific Congress of the International Progressive MS Alliance was held in Toronto in May. This year the meeting covered the theme ‘Progressive MS – making a difference through rehabilitation and symptom management.’

MSIF and its member organisations play a key role in this Alliance which aims to accelerate solutions for people living with progressive forms of MS. MSIF, MS organisations, researchers, clinicians, pharmaceutical companies, trusts and foundations and people affected by progressive MS from around the world rally the global community to raise the profile, highlight the unmet needs of people living with progressive MS and find solutions. The Alliance’s goal to address the unmet needs of people with progressive MS includes strategies to deliver new treatments as well as to enhance wellbeing.

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.

The conference 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.

The conference brought together an inspiring collection of speakers and delegates and provided ample discussion time to deeply explore the themes raised by the speakers.

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.

We heard from researchers in stroke and spinal cord injury about the successes and challenges that 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 an intriguing discussion on how potential drug treatments that target the biology of plasticity could work synergistically with physical rehabilitation to restore function.

And 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, Prof 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.

Read the full report from the conference here.

With thanks to MS Research Australia – the lead provider of research summaries on our website.