Follow the journey of Aroha and Dr Ngata as we learn about the DecodeME findings. Learn more at www.anzmes.org.zn/world-me-day/take-me-seriously-2026#takeMEseriously #EducateME #anzmes #worldmeday

The ANZMES Executive Committee is calling for a national standard of care grounded in evidence to prevent avoidable harm and support patients safely. This World ME Day, join us to learn the science and help change the story for those still waiting.

www.worldmealliance.org/medical-education-hub

www.anzmes.org.nz/world-me-day/take-me-seriously-2026Learn more about ANZMES Know M.E. Clinical Education Programme via the link above.

#EducateME #TakeMESeriously #WorldMEDay2026 #ANZMES

Transcript:Anna: The Time is Now. Take ME Seriously.

Steve: ME/CFS is a serious, multi-system disease. Patients wait years for diagnosis. Many are housebound. Some are children. Thousands are from school, workplaces, and community life.

Amy: For too many, it remains a mystery of modern medicine. Medical education simply hasn't kept pace with the evolving science.

Ros: When clinicians are trained to understand post‑exertional malaise, orthostatic intolerance and sensory overload, we move from uncertainty to preventing clinical harm.

Anna: The research is clear, but the gap between scientific discovery and clinical practice is still too wide. We need education to bridge that gap.

Suzanne: Every patient deserves a diagnosis grounded in evidence, and every clinician deserves the tools to provide safe management and support.

Wendy: For every clinician who wants to provide patient-focused evidence-informed ME-aware care with confidence, visit the World ME Alliance Medical Education Hub and contact ANZMES about our Know M.E. Clinical Education Programme.

Fiona: Our goal is simple: empower healthcare professionals with the tools they need, and support patients with a clear, legitimate pathway to diagnosis and appropriate care.

Ros: Take ME seriously this World ME Day.

Anna: Learn the science. Change the story.Everyone: The Time is Now. Take ME Seriously.

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