In honour of World MS Day the Flagship held its annual symposium in May, sharing our research and connecting with the broader MS community. For more about the event, and to see what other exciting projects we're involved in, read on... No images? Click here Menzies Institute for Medical ResearchMS Research Flagship
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Survey: Health Economic Impact of MSThe 2023 Health Economic Impact of MS study — the current survey being undertaken by the Australian MS Longitudinal Study (AMSLS) — gathers in-depth information on quality of life and the direct and indirect costs of MS to both individuals and Australia as a whole. Some costs associated with MS, such as medications and health professional appointments, can be easily identified, understood and estimated. However these only represent a small percentage of the true cost of MS. That true cost can include significant financial and life costs such as lost wages and professional or unpaid family help with tasks impacted by fatigue associated with everyday life. Repeated every 5-10 years, the Health Economic Impact of MS study captures the most accurate picture of life with MS in Australia and ensures the most important issues can be monitored, updated and addressed on a regular basis. |
There have been some big wins since the first report in 2010. The newer, higher efficacy disease modifying therapies directly translate to better employment outcomes, for example. This in turn has led to a significant decrease in the indirect cost of lost wages. However, the number of people diagnosed with MS is still on the rise and the overall cost of MS per person has also risen. This indicates that MS remains a significant challenge to both individuals and Australia as a whole. The current survey will be a powerful tool to help continue advocating for positive change. If you're living with MS in Australia and aged 18 or older you're eligible to join the AMSLS and complete the survey. The more participants the greater the impact of our research, so please consider registering today. The AMSLS is a partnership between Menzies Institute for Medical Research and MS Australia |
To mark World MS Day 2023 we hosted our annual ‘Research with Connections’ event in Hobart, sharing our work and making new connections with people living with MS and the wider MS community.
The event brought together more than 100 people, the majority MS consumer and community members. They all braved the cold (kunanyi / Mt Wellington was snow-capped!) for the promise of an exciting program of world-class research and community presentations and were rewarded in spades.
Professor Tracey Dickson, Menzies Institute for Medical Research Director, opened the event with a warm welcome to all. Next up, MS Australia board member Sharlene Brown set the scene for the day speaking about the importance of connecting research with people. She was followed by Senator Catryna Bilyk, Labor Senator for Tasmania and Parliamentary Friend of MS, talking about the importance of community connections for people with MS.
Jayne England, who lives with MS, bravely took to the stage to describe her deeply moving and inspiring journey from MS diagnosis to conquering Kosciusko via a stem cell transplant. And Perron Institute's Associate Professor Jenny Rodger shared insights into the research journey leading to the use of magnetic brain stimulation for remyelination in MS clinical trials.
Our researchers also had the opportunity to present to the audience about their projects, which included:
In each project the crucial role played by MS consumers was evident.
A special mention must go to our returning MC for the day, MS Australia President Associate Professor Des Graham, who once again expertly navigated the flow of conversations between presenters and audience members.
Event feedback was overwhelmingly positive, with 90% of respondents agreeing the event inspired them to participate in research and 94% saying they will attend more events like this one.
All in all the day was a great celebration of the power of consumer involvement and connections between researchers and community, and we look forward to making even more connections when we host the event again next year.
If you missed out on attending, you can watch the presentations on Menzies YouTube channel.
Event images feature (top to bottom): the audience and stage; Jayne England; Senator Bilyk, Professor Tracey Dickson & Professor Bruce Taylor; Dr Anna Ritchie & Dr Nicholas Blackburn; Gilli Barnard & Associate Professor Des Graham; Associate Professor Jennifer Rodger.
Research with Connections 2023 was supported by funding from the Australian Government
A small but mighty team of 10 people representing the MS Research Flagship participated in this year's MS Plus annual fundraiser The May 50K.
Supported by friends and families, dogs and podcasts, they rose to the challenge. Throughout the month of May they walked, ran and sometimes hobbled a combined distance of more than 1400km.
They also smashed their fundraising goal, raising more than $10,000 between them. Money raised will support life-changing research into preventing, treating and finding a cure for MS.
We'd like to thank everyone who generously donated to our team and who gave encouragement (and the occasional foot rub) along the way. A great effort from all involved!
'Walking selfies' from some of our MS Research Flagship The May 50K team members
Pro-inflammatory diets a risk for MS
Pro-inflammatory diets could impact MS relapse risk, according to new research published in Multiple Sclerosis Journal.
A higher DII score (indicating a more pro-inflammatory diet) was associated with a higher risk of relapses and an increase in lesion volume detected by MRI. No association between DII and disability progression was found.
Diets considered to be pro-inflammatory often include high amounts of commercially baked goods, fried foods and fatty meats while at the same time are low in fruits, vegetables and other healthy foods. But it’s specific features of these diets that contribute to their high DII score, including saturated fat, total fat, trans fat, total energy, cholesterol, vitamin B12, and protein.
While an anti-inflammatory diet can’t replace anti-inflammatory medications in MS treatment, this study suggests that adopting an anti-inflammatory diet — one that’s high in fruits, vegetables and legumes and low in ultra-processed refined foods, for example — may contribute to the overall health and wellbeing of people with MS.
The study authors say more research is needed to confirm these findings.
Read the full study here.
Lead author Dr Alice Saul was supported by a MS Australia postgraduate scholarship for this study.
MS WorkSmart is a digital program, specific for people with MS, that not only provides knowledge but also encourages people with MS to make important changes and modifications to their lifestyle and workplace that aim to improve their work productivity and ultimately reduces the risk of unemployment and underemployment due to MS.
We are currently testing the feasibility of delivering and evaluating the MS WorkSmart program. Around 40 participants of the Australian MS Longitudinal Study are randomised to either the MS WorkSmart program or ‘usual care’. Those randomised to MS WorkSmart will complete an online course, receive coaching sessions, have access to a closed Facebook group and will be able to use a symptom tracker app called My SymptoMS. My SymptoMS is an MS-specific tool designed to identify the lifestyle factors that have positive and negative effects on MS symptoms.
Once the feasibility study is completed, we aim to conduct a larger study to demonstrate the effectiveness of the intervention. We will also examine whether the benefits of the program outweigh the costs of running the program.
We are working closely with consumers as well as MS Australia and its member organisations to ensure that the program will be rolled out nationally once effectiveness has been demonstrated.
(left to right) MS WorkSmart's Dr Alisée Huglo and Professor Ingrid van der Mei
A screenshot of the MS WorkSmart digital platform
MS WorkSmart and the My SymptoMS app have been made possible by the generous funding from IOOF (Insignia Financial), MS Western Australia, and the Medical Research Future Fund.
In its principles for consumer involvement in research, the Medical Research Future Fund states that the different perspectives and lived experiences that consumers bring to research improves its quality, relevance and impact.
Consumer involvement underpins every aspect of the MS Research Flagship's operations and projects including (but not limited to):
In this and future issues of our newsletter we'll hear from our researchers why (and how much) consumer involvement is valued.
"In a research study, participants are often only identified by a number and numbers they remain for many scientists, especially greener ones. I was very lucky to be involved with MS consumers early on in my MS career, so that people never really became numbers for me.
Consumers have helped me understand how to be a better scientist, how to make our research more accessible, how to use language that is positive and empowering for all. They have given me a real purpose when it comes to helping people with MS and helped me understand better what people with MS go through daily.”
Dr Alisée Huglo, MS WorkSmart project.
In April the Menzies Institute for Medical Research held its annual excellence awards which celebrate the ten best research papers published in the previous year as well as awarding excellent mentoring, professional staff and the research that has had the most impact.
This year MS Research Flagship staff won five of the 14 awards presented.
MS Research Flagship recipients of Menzies' excellence awards (left to right) Xin Lin, Amin Zarghami, Professor Ingrid van der Mei, Dr Laura Laslett, Natasha Stevens.
Dr Alice Saul and Dr Barnabus Bessing have been awarded their PhDs.
Read the full paper here.
A warm welcome to Natalie King who joined the Menzies Brain Health and Disease group in April. Natalie is working with Dr Jessica Fletcher and Professor Kaylene Young on the Flagship's MS Stem project where she is looking at blood vessel cells from people living with MS to understand how they compare with cells from people who aren't living with MS.
In February we published our Health economic impact of multiple sclerosis in Australia in 2021 interim report which found a 30% increase in the number of Australians living with MS over the four years since the previous update in 2017. The report, commissioned by MS Australia, generated widespread media attention across a range of platforms. In summary:
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