Join us today on Severe ME Day, August 8th, for our interview with Wendy Matthews, a pivotal voice in the ME community, particularly for severe ME.

Wendy brings a unique and deeply informed perspective as an ANZMES Executive Committee member, Chair/Trustee of ME Respite, and through her 30 years of lived experience with severe ME, having been largely bed-bound for 20 of those years.

This interview will be an exploration of the crisis facing the severe ME community, focusing on three key areas:

1. The Lived Experience: Wendy will share the unfiltered reality of living with severe ME—the daily battles, the profound loss, and the immense resilience required to navigate a life largely hidden from the world.

2. A Message to Health Professionals: The interview will articulate what healthcare professionals MUST know to provide safe, evidence-based care and, crucially, to prevent the harm that so many in our community have endured.

3. A Call to Policymakers: Wendy will outline the clear, non-negotiable actions that policymakers must take to address systemic neglect and build a system of support that provides for the most vulnerable - including her vital goal of establishing dedicated, ME-trained respite centres.

This interview is the centerpiece of our campaign activities for the day, which include the sharing of our 'InMEmory' and 'InSolidarity' initiative/video tributes to honour those we have lost and those who continue to live in the deepest isolation of this illness.

We hope this ‘event’ will create a powerful narrative, underpinning our collective call for urgent action.

Learn more and download resources at: https://anzmes.org.nz/world-me-day/severe-me-day-2025-8-august-2025/

#SEVEREMEDAY

Listen to the ANZMES Executive Committee as they call on policymakers and health professionals to take vital action for those in our community living with Severe-Very Severe ME/CFS.

#RememberingtheUnseen #SevereMEDay #MillionsMissing #CalltoAction #MedicalEducation

Transcript:

Fiona: “Today, we speak for the 25%—the thousands of New Zealanders with Severe ME who are missing from their own lives.”

Ange: “Severe ME is not fatigue. It’s a catastrophic illness that can leave people unable to eat, speak, or tolerate light and sound.”

Amy: “Many are trapped in darkened rooms, requiring 24/7 care. Their suffering is invisible—but it is real.”

Anna: “To our healthcare professionals: your care can make or break lives. Learn about Post-Exertional Malaise. Stop harmful advice. Believe your patients.”

Steve: “To our MPs: inaction is no longer an option. Fund dedicated care and research. Mandate ME education. Update disability policy.”

Ange: “To the public: you can help. Share this message. Start a conversation. Amplify the voices of the #MillionsMissing.”

Wendy: “Every name in our InMEmory tribute is a life lost to systemic neglect. Every person still fighting deserves better.”

Anna: “This Severe ME Day, we demand more than awareness. We demand urgent, systemic change. Join us.”

Can't wait til Severe ME Day on August 8th? Take a sneak peak at this 8 minute clip from our Interview with Wendy Matthews. Then tune in at 12 noon on August 8th, 2025 to watch or listen to the full Event.

🚀 What to Expect:✅ Eye-opening insights into the complexities and debilitating nature of Severe ME✅ A call to action for policymakers to address systemic neglect✅ Key information to ensure health professionals prevent harm and manage ME/CFS using the latest evidence-based care guidelines.

📅 Mark your calendars 12 noon, 8th August & spread the word! 🗣️ 📢 Let’s dismantle myths and make #SevereMEDay a catalyst for change.