People living with multiple sclerosis have a new opportunity to help shape the way MS is treated and monitored in the future, with a new partnership between Sydney Adventist Hospital and the Australian National University.
MS Our Health in Our Hands (OHIOH) is an initiative of ANU, bringing together researchers, clinicians and people with lived experience of MS to develop new approaches to the personalised management of this condition. The ANU is a major university partner of Sydney Adventist Hospital, and MS OHIOH is the first research collaboration between the two organisations.
A symposium held at Sydney Adventist Hospital on March 30 marked the launch of the Sydney MS OHIOH research clinic, based at the San. This is the sister site to the MS OHIOH research project at ANU in Canberra, and will give the Sydney MS community the opportunity to participate in the important field of MS research.
Why is MS OHIOH needed?
Multiple sclerosis (MS) is the most common demyelinating condition in adults. In MS, the myelin sheath that usually protects nerves is damaged, rendering the nerves unable to communicate messages from the brain to the rest of the body in the usual way. This can cause symptoms such as loss of motor function, pain and loss of sensation. It affects movement in the limbs, and can impact vision, memory and fatigue levels.
The way MS manifests in individuals over time, the symptoms of the disease and how individuals respond to treatment is incredibly varied and unpredictable. There is a lot about MS that still confounds the MS community.
“I remember the days when the only treatment for MS was intramuscular dexamethasone,” said Professor Geoffrey Herkes, neurologist and director of research at Sydney Adventist Hospital.
“Thankfully times have changed. Through the hard work of researchers, clinicians and people living with MS who have driven the research, we now know a lot more about MS, and have many more treatment options. However further research is crucial to improve the way we detect, treat and ultimately prevent MS from progressing.”
This is what motivates those involved in MS OHIOH. “Effective prediction of disease progression and outcomes remains elusive,” said Associate Professor Anne Bruestle, the MS Research lead in OHIOH since 2017 and chair of OHIOH since 2022.
“While a large array of therapeutic options is now available, navigating the choice of treatment is not supported by clear guidelines based on biomarkers. A major challenge in MS is being able to ascertain appropriate therapeutic and clinical evaluations so that care—personalised to each individual—can be given from the time of diagnosis through the course of the disease.
“We want to find ways to monitor MS more closely with non-invasive or minimally-invasive approaches,” continued Associate Prof Bruestle. “Being able to identify biomarkers that could be measured frequently will help clinicians better monitor the effectiveness of treatment.”
MS OHIOH harnesses the expertise of researchers and clinicians across many disciplines, including people from physics, engineering, chemistry, data, laboratory research, medical specialists and people living with MS.
Lived experience shapes research
To better understand the experience of people living with MS and their relationship with research, MS OHIOH includes in their research projects a number of advisors who have MS.
Mark Elisha was diagnosed with MS 10 years ago and became involved in MS OHIOH four years ago as an advisor. “We advise researchers about the experiences of people with MS, how we’d like research to be conducted and how we’d like to be treated throughout the research process,” said Mr Elisha.
“There are a lot of mysteries about MS. In some instances we have an invisible disability and it is actually quite hard to measure some of the symptoms. Therefore if you try to do research without considering the experience of people with MS, you might struggle to get a worthwhile outcome from research.”
There are still huge gaps in knowledge and treatment of MS, particularly for people with progressive MS. “We need better treatments and, for me, the only way to do that is to continue being on the frontlines advocating for ourselves and being involved in research. I take pride in that. With MS you can feel helpless, because you can do all the right things and your MS can still get worse. So being involved as a research advisor is a way for me to take back control and take the fight back to MS.”
Donations towards Sydney MS OHIOH research can be made via the San Foundation on email@example.com. The San Foundation is the fundraising foundation of Sydney Adventist Hospital. It has already contributed $50,000 towards a research nurse/officer for MS OHIOH’s research clinic at the hospital.