Severe ME Awareness Day 2025 - Emerge Australia

Severe ME Awareness Day 2025
Friday 8 August

Join us for a special online event to mark Severe ME Awareness Day. This symposium is designed to help raise understanding of Severe Myalgic Encephalomyelitis (ME), a complex and serious illness that can leave people bedbound, isolated, and in need of daily care.

As a part of rasing awareness for Severe ME Day we asked the community:

What would change in your life if you had a consistent, knowledgeable, and affordable/bulk billed GP who could visit your home?

Their full stories can be heard below, via the Severe ME – Hear their voice button.

Symposium

On Friday, 8 August, at 2:00 PM (AEST), CEO Anne Wilson will host a symposium featuring a live panel discussion. The panel will include individuals with personal experiences, such as Lily Schubert and Lynne Harris, who cares for her son, Daniel. During the event, Laura Allen will be in conversation with Sue McPhail who cares for her daughter Rebecca with Severe ME/CFS, sharing her family’s lived experience and emphasising the importance of a clearly documented medical history to engage the healthcare system, especially when it’s difficult to speak up. Anne will also discuss how the community can engage in advocacy and provide support.

This event is open to everyone, whether you’re living with Severe ME, caring for someone, working in healthcare, or just wanting to learn more. The session will be recorded, allowing you to watch it at your own pace and convenience. It’s a chance to listen, learn, and be part of a community that wants to make a difference.

Online Symposium with Emerge Australia

Severe ME Awareness Day - 2pm Friday 8 August 2025

01 HOST

Anne Wilson

Chief Executive Officer, Emerge Australia

Anne is an accomplished NFP CEO with a former focus in respiratory and renal health, and a track record engaging stakeholders and building capacity across advocacy, education, research and service delivery.

Anne’s current focus is dedicated to empowering Australians impacted by ME/CFS and long COVID. A graduate of the Stanford University Graduate School of Business NFP Leadership Program, Anne’s qualifications span degrees in Human Services and Adolescent Health.

In 2008, Anne was recognised as the NFP Network Association CEO of the Year, and currently is Director and Secretary/Treasurer of the International Kidney Cancer Coalition.

02 Introducing

Lynne Harris

primary school teacher, mother and full-time carer of her son with Severe ME/CF

Lynne Harris is a former junior primary school teacher from South Australia who became a full-time carer for her eldest son after he developed severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in his early 30s. For over three years, she has provided 24/7 care, supporting her son through extreme physical limitations, including an inability to feed, hydrate, or communicate.

Lynne has shared her family’s journey in two episodes of the Emerge Australia Imagine Podcast, offering a raw and compassionate perspective on the challenges of caregiving for someone with severe ME/CFS. Her lived experience highlights the urgent need for greater awareness, support, and resources for both patients and carers.

As a speaker at the Severe ME Symposium, Lynne brings a powerful voice to the conversation, advocating for those who are often unseen and unheard.

03 Introducing

Lily Schubert

Content creator / Severe ME Patient

Lily Schubert is a Sydney-based content creator and chronic illness advocate known for her candid storytelling on TikTok (@lilygschubert). Diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Postural Orthostatic Tachycardia Syndrome (POTS), and other related conditions, Lily spent six years largely bedbound. Through her videos, she shares her journey of resilience and gradual recovery, including milestones like stepping outside after years indoors and taking her first swim in six years. Her content offers insight into the daily realities of living with severe ME/CFS, aiming to raise awareness and foster understanding.

Lily’s experiences and advocacy work make her a valuable participant in the upcoming Severe ME Symposium, where she will contribute her perspective on living with and managing this complex condition.

You can follow her journey on TikTok HERE.

04 Introducing

Laura Allen

Health & Support Services Manager, Telehealth Nurse

.Laura joined the Emerge Australia team in 2019.

Laura has worked as a nurse in various roles since 2007 but has a background in Intensive Care and surgical nursing. Since commencing at Emerge Australia she has overseen and delivered the Telehealth Nurse Service program.

She is committed to providing a service that is free of stigma and discrimination, delivered with integrity, compassion and empathy

05 Introducing

Sue Mcphail

Early Childhood educator, mother and full-time carer of her daughter with Severe ME/CF

Suzanne McPhail (Burridge) is a former early educator for kindergarten inclusion support services (Yooralla) in Victoria. She became a carer for her daughter Rebecca, when Bec was 17 years of age, to help her with distant education. For eight years now, Sue has been a fulltime carer for Rebecca as she declined to Severe ME at the age of 21.

While Rebecca was diagnosed at 18, she became unwell at 16 and had to gradually reduce her hours at school to manage. Sue has faced so many challenges navigating this journey and trying to find effective specialist care for her daughter’s declining health and nutrition, and then long hospitalisation as a result.

Currently Sue’s focus is on maintaining Rebecca’s nutritional status and comfort in the home, with the help of competent support workers. Sue’s story reinforces the urgent need for change and her learnings provide a beacon of hope for families struggling to navigate Severe ME/CFS.

As a speaker at the Severe ME Symposium, Sue brings valuable insights and incredible courage to our advocacy.