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.

Today on World ME Day: May 12, 2025, join Jaime Seltzer (#MEAction) and Fiona Charlton (ANZMES) for Busting Myths with Facts.

Jaime Seltzer is Scientific Director at #MEAction, TIME100 Health honoree, and affiliate researcher with Stanford University. Jaime is leading ground-breaking projects in ME/CFS, Long COVID, and infection-associated chronic illnesses.

Fiona Charlton is President at ANZMES - the National Advisory on Myalgic Encephalomyelitis / chronic fatigue syndrome (and associated conditions) in Aotearoa / New Zealand.

This conversational interview covers:

• What is ME/CFS?
• Post-Exertional Malaise and Pacing
• Who gets ME/CFS?
• Children with ME/CFS
• Aetiology / causes of ME/CFS
• Severity in ME/CFS
• What ME/CFS is NOT
• Psychosocial impacts of chronic illness
• Brief history of treatments that don't work
• Disease Management
• Final Message for healthcare providers and people with ME/CFS or suspected ME/CFS.

Music Credit: “Tell me the Truth” by Denys Brodovskyi via Pixabay

https://pixabay.com/users/denys_brodovskyi-26932554/

You can watch on YouTube: https://youtu.be/vrmsldi2l7o

Available on Facebook, LinkedIn, and podcast platforms.

Resources:

Infection-Associated Chronic Illness Flashcards for Medical Students (#MEAction): https://millionsmissing.meaction.net/teachME/ Recommended by the CDC (https://www.cdc.gov/me-cfs/hcp/toolkit/resources-for-medical-students.html).

Diagnosis and Management of ME/CFS with CME: https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext

IoM 2015 https://pubmed.ncbi.nlm.nih.gov/25695122/ https://www.cdc.gov/me-cfs/hcp/diagnosis/iom-2015-diagnostic-criteria-1.html

Best Practice: https://anzmes.org.nz/national-advisory-on-me-releases-best-practice-guidance-with-clinician-and-researcher-support/

Know M.E. Series (ANZMES) with CME: https://anzmes.org.nz/new-cme-accredited-series-for-health-professionals/

Navigating Complexities (Dr. Cathy Stephenson and Fiona Charlton) with CME: https://myhealthhub.co.nz/navigating-the-complexities-of-me-cfs-and-long-covid-2/

Pacing and Management Guide (#MEAction): https://www.meaction.net/wp-content/uploads/2021/02/Pacing-and-Management-Guide-for-ME_CFS-9.pdf

Pacing for Children (#MEAction): https://www.meaction.net/2022/08/02/just-in-time-for-school-pediatric-pacing-guide/

Severe ME/CFS Resources (ANZMES): https://drive.google.com/file/d/1oL_-NsLVi2JGi3trDfg5qx5J4n6aFRkZ/view?usp=sharing

#TransformingLives #WorldMEDay #MEAction #DisabilityJustice #MECFS #LongCOVID #BustingMythsWithFacts #WorldMEAlliance #ANZMES #Fact #MECFSAwareness #GreatestMEdicalScandal #MillionsMissing #DisabilitySOS #JaimeSeltzer #ANZMES

SEVERE & VERY SEVERE ME/CFS: A Matter of Survival. 🚨

Living with ME/CFS at its most extreme is not just debilitating—it’s life-altering.

🛑 Housebound. Bedbound. Facing starvation due to profound gastrointestinal disorder.

▶️ Take a sneak peek into the harsh reality of severe and very severe ME/CFS in this teaser.

📆 Full talk coming May 12, 12 PM 🎥

#SevereME #VerySevereME #MECFSawareness #WorldMEDay

ME: Factitious or Real? 🚨 Myth vs. Reality 🚨

Is ME/CFS all in the mind? Or is it a real, debilitating disease?

Watch this teaser to unravel the truth.

🔹 Full talk drops May 12, 12 PM—don’t miss it! 🎥

#MECFSawareness #FactNotFiction #WorldMEDay

PEM and Pacing: A Survival Strategy

🔥 Energy is precious when you live with ME/CFS.

🚦 Knowing when to stop, rest, and pace can mean the difference between a good day and a crash.

▶️ Get a sneak peek at how pacing helps manage post-exertional malaise in this teaser.

📆 Full talk coming May 12, 12 PM 🎥

#PacingMatters #MEawareness #WorldMEDay

What Is Post-Exertional Malaise (PEM)?

Ever felt like a simple task left you completely wiped out for days? That’s post-exertional malaise, a defining feature of ME/CFS.

▶️ Watch this teaser to understand why PEM is more than just exhaustion.

⏳ Full talk premieres May 12, 12 PM 🎥

#MECFSawareness #PEMisReal #WorldMEDay