Advocate • Artist • Lived Experience with ME/CFS
In a very special moment for the Emerge Australia Imagine podcasts, we are proud to feature a heartfelt and insightful conversation between CEO Anne Wilson and passionate advocate Stacey Hollings from her bed.
Society just doesn’t understand the need to be in bed, in the dark all the time … I am bedbound because of post-exertional malaise NOT simply because of fatigue … I have left the house once this year – and that was to attend a medical appointment.
Stacey lives with ME/CFS, Ehlers-Danlos Syndrome (EDS), and Postural Orthostatic Tachycardia Syndrome (POTS). Through her lived experience and background in communications, Stacey has become a powerful voice in raising awareness about these complex, often misunderstood conditions. In this candid discussion, Stacey shares her personal journey, sheds light on the realities faced by those with Severe ME/CFS, and highlights the urgent need for better support, recognition, and care.
Together, Anne and Stacey explore topics including common misconceptions about ME, the challenges of living with severe symptoms, and the importance of community, resilience, and advocacy. Stacey also offers her insights on how healthcare providers, policymakers, and society can work together to improve the lives of those affected.
Early diagnosis is critical to prevent people from getting so severely sick – clinical education is needed to enable not only early diagnosis, but also effective care … When I was diagnosed, I didn’t even know how to say myalgic-encephalomyelitis, let alone how to live with it.
Join us as we amplify these vital voices in the lead-up to Severe ME/CFS Day on 8 August. This conversation aims to foster understanding, inspire action, and bring hope to those living with invisible energy-limiting conditions.
The most impactful thing anyone can do for people living with ME/CFS is to believe us and to take us seriously … Believe us about our symptoms and our challenges, treat us with compassion and this will reduce pressure and help so much … Please at least leave us feeling valued, seen and heard, and please don’t add to the difficulties with dismissal, stigma and disbelief … I wish everyone with Severe ME could know that they do matter – I’ve noticed a shift with how many more people do care, and are trying to pave a better way forward.
Follow Stacey’s journey and advocacy on Instagram @living.life.with.m.e; and tune in for this compelling episode – a testament to resilience, community, and the ongoing fight for recognition and better treatment.
We are grateful for Emerge Australia’s Ambassador Bloom sharing her rendition of John Lennon’s Imagine to open and close our podcasts.
