MS Research Flagship
Newsletter

The MS Research Flagship
The MS Research Flagship is a Flagship program of the University of Tasmania, College of Health and Medicine and was established from a long history of multiple sclerosis (MS) research at the Menzies Institute for Medical Research. Menzies has proudly been at the forefront of research advancements in MS for over 25 years. 

MS and the true you

The Australian MS Longitudinal Study (AMSLS) has launched a new survey about self-concept.

The way we think and feel about ourselves — also called our self-concept — can suddenly change as a result of a major life event, such as the diagnosis of MS. The uncertainty around what the future may hold, and how that relates to current life plans, can potentially change the answer to that question “who am I?” and any subsequent life choices made.

Psychology researchers are seeking to better understand potential changes to self-concept after an MS diagnosis. They're also looking at how other factors such as age and employment status may contribute. Learning more about changes in self-concept will help improve researchers' understanding of lived experience, and ultimately improve supports for people living with MS.

How to get involved

If you're living with MS (and over 18 years of age) and want to take part in the AMSLS 'Concept of Self' survey and share your story, register here: bit.ly/3QjXgLk

For more information contact the AMSLS team on 03 6226 4739 or email AMSLS.info@utas.edu.au

The AMSLS is a partnership between the Menzies Institute for Medical Research and MS Australia.

Understanding MS massive open online course — enrol now!

Enrolments are now open for the September Understanding MS massive open online course.

Join thousands of others who have enrolled in the course and increase your knowledge and understanding of MS.

The September course features new content on MS and sleep, hematopoietic stem cell transplantation (HSCT) and trends in MS prevalence, so there's something for everyone, even if you've completed the course before. 

Captions are also now available on all course videos.

How to get involved

This free course begins on Monday 12th September. Enrol today: bit.ly/3oRgtIy

Understanding MS was developed in partnership with MS Plus and in collaboration with the Wicking Dementia Research and Education Centre.

Flagship Consumer and Community Engagement Manager Viv Jones clocks up kilometres for the May 50K at the MS Walk, Run and Roll in Launceston.

The May 50K

The May 50K is a major fundraising activity that brings people together across Australia to support MS research.

During May, our workplace team of 16 people from the University of Tasmania's College of Health and Medicine, the Menzies Institute for Medical Research, and the MS Research Flagship took to the footpaths, streets and trails to clock up 50km (or more) and raise funds for this great cause. 

After 31 days of running and walking, our team had collectively logged 1900km, and raised $8,495 of vital funds. Our team also placed 11th of the 260+ workplace teams registered for the event (impressive when you consider the field included workplace behemoths such as Merck, Coca-Cola Europacific Partners Australia, Bankwest and Telstra).

The MS Research Flagship is proud to participate and raise funds to help kiss goodbye to MS, and we look forward to pledging our quads, calves, hamstrings and glutes to the event again next year.

Consumer and Community Involvement in Research workshop

In April, the Flagship's Consumer and Community Involvement (CCI) Program ran a full day workshop in Hobart on consumer and community involvement in research. 

Ben Horgan from the Western Australian Health Translation Network (WAHTN) facilitated the morning session, which aimed to empower researchers to work in partnership with consumers and develop CCI plans in research from an early stage.

The afternoon session, facilitated by Rebecca Essex, Department of Health and Menzies' Kim Jose focused on how to develop and improve plain language communication skills in health research.

About 40 people participated in the workshop, including 10 consumers from the MS Research Flagship's Consumer & Community Reference Committee. All attendees ended the day with a greater understanding of the importance of consumer involvement in research, and better equipped to effectively communicate with and involve consumers in their work.

The Consumer and Community Involvement in Research workshop was co-sponsored by the MS Research Flagship and the Tasmanian Collaboration for Health Improvement.

Research with Connections

In recognition of World MS Day 2022 we held our second Research with Connections event to connect Menzies researchers with people living with MS, their families, friends and carers.

The event, funded by the Australian government, was expertly chaired by Associate Professor Des Graham, President of MS Australia. Held at the Tailrace Centre in Launceston, it brought together more than 130 members of the MS community. We were delighted that the majority of attendees (about 80%) were consumers, with researchers or health/service providers making up the balance.

Senator Wendy Askew, chair of Parliamentary Friends of MS, gave the opening address speaking of the importance of connections throughout the MS community. 

Our researchers took to the stage to describe their MS research projects, progress, findings, and opportunities for consumer involvement. And we heard from a range of inspiring speakers including MS Australia's Andrew Potter and Andrew Giles on the role of advocacy in addressing the needs of people living with MS, artist Leoni Duff who lives with MS speaking about art as therapy and Jodi Haartsen from MS Plus on improving health literacy.

The themes of connection and community involvement were prominent throughout the event, which saw the establishment of new relationships and continued consumer involvement in our research projects. It was an enriching and rewarding day for all involved, and we look forward to hosting the event again next year.

If you missed out on the event, you can watch the presentations here: bit.ly/3d571yS

Event images, featuring (top to bottom) Andrew Giles and Andrew Potter; the audience and stage; members of our Consumer & Community Reference Committee; Senator Wendy Askew.

MS and sleep

New research has found that poor sleep may be an independent symptom of MS. It suggests that improving sleep quality may substantially improve quality of life in people living with MS.

In this study, performed as part of the Australian MS Longitudinal Study (AMSLS), researchers examined how sleep related to 13 common MS symptoms. The study, published in the Journal of Neurology, Neurosurgery, and Psychiatry, aimed to determine whether sleep affected health-related quality of life, independent of these common symptoms.

Dr Laura Laslett, epidemiologist and study author said, “Sleep difficulties are common in the community, but we found that they are even more common in people with MS (33-45% vs about 65%).”

Analysis of responses from 1,717 AMSLS participants showed that people with MS who were younger, overweight or obese, those with higher disability levels, those who had a relapse in the last 12 months, and those who reported having higher levels of some MS symptoms (including fatigue and cognitive symptoms, feelings of anxiety and depression and pain and sensory symptoms) reported a lower sleep quality after accounting for other factors.

“Interestingly, sleep dysfunction stood out as being substantially associated with health-related quality of life independent of other symptoms of multiple sclerosis,” said Dr Laslett

We can all benefit from a good night’s sleep. But these findings clearly demonstrate that sleep quality has a clinically important impact on people with MS.

Read the full article here: dx.doi.org/10.1136/jnnp-2022-329227

The AMSLS is a partnership between the Menzies Institute for Medical Research and MS Australia.

TAURUS 2 study — now recruiting!

A new study assessing the effects of magnetic brain stimulation (MBS) on MS is about to commence.

Many MS symptoms directly or indirectly result from the death of brain cells called oligodendrocytes. Oligodendrocytes are the central nervous system cells that produce myelin and provide metabolic support to neurons. The death of oligodendrocytes leads to the loss of myelin, formation of brain lesions and increasing disability. There are currently no treatments that address this issue.

Findings from our pre-clinical work demonstrate that MBS has significant potential as a remyelinating therapy in MS. MBS affects the brain by non-invasively activating nerve cells and changing nerve cell activity. In laboratory studies of mice, four weeks of MBS increased the number of new oligodendrocytes producing myelin. Our phase one clinical trial, in which we delivered MBS to 20 people with MS for four weeks, showed that MBS is safe.

The next step is TAURUS 2, a phase two clinical trial which will continue to assess the safety of MBS. It will measure the effect of MBS on MS symptoms including upper and lower limb function, cognition, fatigue, anxiety, depression, sleep and quality of life. It will also assess whether MBS effectively promotes remyelination in people with MS using advanced MRI or brain imaging techniques.

TAURUS 2 is led by Professor Bruce Taylor, Professor Kaylene Young, and the Menzies research team (pictured), and will now be rolled out across six sites nationally. They will be recruiting over 100 people with MS, and participants must be willing to travel to the trial site for MBS each weekday for four weeks.

The trial sites are:

• The Menzies Institute for Medical Research, Hobart, TAS
• The Launceston General Hospital, Launceston, TAS
• Alfred Health, Melbourne, VIC
• John Hunter Hospital, Hunter New England Health, NSW
• Perron Institute for Neurological and Translational Science, Perth, WA
• The Mater Centre for Neuroscience, Brisbane QLD

How to get involved

For more information about this study, or to find out if you’re eligible to take part, please visit mstrials.org.au/taurus2

(Top to bottom) TAURUS 2 researchers Julie Sansom, Vincent Ezegbe, Amin Zarghami

Menzies has received funding from the Australian government and the Irene Phelps Charitable Trust to support the TAURUS 2 study.

Meet our new Consumer & Community Reference Committee members

We recently welcomed three new members to our Consumer & Community Reference Committee.

The purpose of the committee is to provide an avenue for active consumer and community involvement and input to all current and future MS research activities undertaken by the MS Research Flagship and its collaborators

So what motivated our new members to join the committee, and what experience and skills do they bring to the group? 

Here's what they told us.

Angela Land

"I am a peer support coordinator with the client engagement and wellbeing team at MS Plus. I was diagnosed with relapsing remitting MS 10 years ago. I am passionate about empowering others to live well with MS despite the obstacles and challenges. I believe my true empathy from living with MS myself and my connection to the MS community will enable me to value-add to the committee."

Simon Douglas

"I am stoked to become a member of this committee. I felt I could complement the team nicely in many ways. As the manager of a Neighbourhood House and active volunteer with our state peak body, I am strongly involved in advocacy work for improved access and connection to services for my community on both a local and statewide level. Living with MS myself for over 10 years, combined with my working career to this point, I believe has equipped me well to value-add to the committee's aims."

Bridie Phillips

"I am a registered nurse with over 36 years experience. For the past seven years I have been employed as an MS Nurse Advisor with MS Plus. My husband was diagnosed with MS in 1999. I have a passion for providing clinical and emotional support, education and advocacy to people living with MS and their carers. I believe that joining the committee will give me the opportunity to extend my contribution to the research agenda."

Dr Suzi Claflin, research lead for the Understanding MS massive open online course, received the Young Tall Poppy Award for 2022 from the Australian Institute of Policy and Science in recognition of her work in science communication and supporting the MS community.

Academic promotions 

Congratulations to the following Flagship researchers who all achieved academic promotions in the first round for 2022:

• Dr Yuan Zhou
• Dr Suzi Claflin
• Professor Kaylene Young

Academic promotions reflect the significant and sustained contributions academics make to the University of Tasmania, helping to make a positive difference for its students, local communities and beyond.