Severe ME Awareness Day 2025 - Emerge Australia

Severe ME Awareness Day 2025
Friday 8 August

Severe ME Awareness Day, 8 August each year, is a day of awareness and visibility for the estimated 25% of people living with severe ME/CFS who are often housebound or bed bound.

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

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

Their full stories can be read here.

Symposium

On Friday, 8 August, at 2pm (AEST), CEO Anne Wilson hosted a 1-hour online symposium featuring a live panel discussion.

Almost 100 people registered for the event, where the panel, Lily, Lynne and Sue, shared powerful personal stories of their day-to-day experiences of living with and caring for someone with Severe ME. They also discussed the medical care they have received and what additional in-home supports would assist them.

To ensure everyone can engage, we will be sharing both a video and audio recording in the coming days, allowing you to participate at your own pace. Thank you for your understanding and support as we work together to support a more inclusive dialogue.

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/CFS

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/CFS

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.