Follow up from the Myositis Discovery Programme's Live and Local Events

Thank you once again for your support of our Myositis Research Road trips this year. We finished up with our final session in Bunbury, WA.

Over the 9 events, we had around 400 attendees, which is amazing!

We are very grateful to all of our collaborators and colleagues who joined us as well. And of course, another huge thank you to the Myositis Association Australia team for supporting this initiative.

Here is some follow-up on some of the questions and items discussed across the events. We have attempted to summarise information by category, and provide you with links and further information where possible.

We had discussed collating the presentation slides and sharing these with you, however it was very difficult to pull everything together, including from our guest speakers, in a cohesive way. Instead, we are sharing the links from the Perth event recordings, so that you review these talks in full. For the guest speakers, we have provided their details so that you can contact them directly for any further information.

Kelly Beer RN
Clinical Research Manager,
Myositis Discovery Programme

On behalf of the MDP team
Personalised Medicine Centre
murdoch.edu.au

Talk Recordings

Please find here the link to the playlist for the recordings. Primarily these are the sessions given by the MDP team at the Perth event, but the playlist will also include the presentations from Dr Matt Parker and Dr Stephanie Frade from Sydney. We are still finalising some of the recordings and uploads, but these will be added to the playlist when available, and accessible via the same link: https://www.youtube.com/playlist?list=PLLXHDzPJB0mzs-6Wvd5QPjmk3yKEejl6L

Guest Speakers: Myositis Clinicians/Researchers

The attached table summarises our guest speakers/colleagues at each location, and their organisation. If you would like to get in touch with any of these clinicians/researchers, please contact their institutions to ask for best contact information. All of these clinicians/researchers have an interest and expertise in myositis.

Table of Speakers Download

Discussion / Question Topics

The below section covers questions or discussion topics that came up repeatedly at events or were significant discussions.

Diet

We had questions related to diet at most events. Currently, our myositis team does not recommend any specific diet (everything in moderation, nothing in excess), however we are very interested in further research into the influence of the gut and diet on myositis and inflammation. It is a growing area of research across many conditions.
Some of you may be interested in the linked article here of a case study of use of a ketogenic diet in IBM: https://pubmed.ncbi.nlm.nih.gov/33224095/
At the Brisbane event, Dr Katrina Chakradeo was able to share a Mediterranean Diet handout that she provides to patients. This is available here

Exercise

Please see Ian’s talk recordings for more information on exercise, but below are some resources that Ian developed and were discussed during the events:
- Information sheet – ‘Why Do My Muscles Get Tired So Easily?’ And ‘Matching Your Exercises to the Strength of Your Muscles’ .

Mental Health / Self-Management

Please find below the TMA (American Myositis Association) ‘My Myositis Tracker’. This is the tool that Merrilee mentioned in her overview on myositis and has the 4 questions that we investigated to see if they were a useful screening tool for mental health concerns. We found that if you score 3 or more ‘yes’ responses, you may benefit from further exploration of your mental health with your doctor.
At several events we discussed the challenge of advocating for your needs if you are in hospital. Please find below an IBM ‘Hospital card’ that we developed. Please feel free to print and take to hospital if you are an in-patient. Several of our patients have used this and found it helpful to generate discussion. Some of the images show advanced IBM and may be confronting to some viewers.
In Brisbane, we were also made aware of a potentially useful resource for patients, called ‘Julian’s Key’. This is a Qld Health initiative, and comprises of a self-completed summary of an individual’s health and care needs. This is intended to be taken with you to any hospital stays, etc, and shared with the care team to help them understand what you may need. A copy of the booklet is below and more information is available here: https://www.health.qld.gov.au/public-health/groups/people-with-disability/julians-key

My Myositis Tracker Download

IBM Hospital Card Download

Julian’s Key – Digital Version (Editable)Download

Research Information

At several events we discussed the best way to keep updated with clinical trials in myositis. The website linked below is a register of most clinical trials across the world. We are required to register all clinical trials with one of 3 international registers, and most researchers will choose to register their trial with the US register listed here. You can search via the health condition and contacts for each trial will be listed.
- Website: https://clinicaltrials.gov/

Our team produce a (fairly!) regular research newsletter, usually twice a year. Please find below our most recent newsletter, from April 2025. We are working on the next edition now! We always share these via MAA, so if you are a member, you will be kept updated on these.

Myositis Research Update – April 2025 Download

Consumer Involvement

Some of you have reached out to express your interest in the Myositis Research Consumer Panel. Because there is quite a bit of interest, I will be hosting an online information session on this early in 2026. At this session I will explain more about the panel and how it works, and will be inviting some of our panel members to give an overview of their experience. Anyone interested can then go on to attend our first meeting of 2026, which will be held around Feb. The link to register for the information session is here if you would like to attend: https://www.eventbrite.com.au/e/myositis-research-consumer-panel-information-session-tickets-1970014892575?utm-campaign=social&utm-content=attendeeshare&utm-medium=discovery&utm-term=listing&utm-source=cp&aff=ebdsshcopyurl
Please note that attending the info session does not obligate you to join the panel! It’s just intended for you to learn more about the panel’s activities.

At many events, particularly the regional events, we discussed the topic of environmental exposures and the possible impact of these exposures on development of disease. This is a big, but very interesting and important, topic. We are currently discussing within our team how we can best address this as a next step. It will also be on the agenda for our consumer panel to explore, as we feel that it will be important for any next steps (such as a survey), to be designed with input from patients and families. If you are keen to be involved with this topic, please do register for the consumer panel information session if you can, but otherwise please just email me and let me know you’d like to be involved.

Links: