Know M.E.

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Know M.E. - where guest speakers talk about pressing issues surrounding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Post COVID conditions. Join researchers, clinicians, and patient advocates as we take a deep dive into the most recent, evidence-based information, so that you too can know M.E. Are you a GP? Sign up for the full News Series at www.anzmes.org.nz to apply for CME credits as you listen.

08/08/2025

Severe ME Day Interview with Wendy Matthews

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: 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. 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. 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

1 giờ 12 phút
07/08/2025 · NỘI DUNG TẶNG THÊM

A call to action message from the ANZMES Executive Committee this #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.”

2 phút
ĐOẠN GIỚI THIỆU PHIM CỦA PHẦN 1

Sneak Peak 8 min preview of our upcoming interview with Wendy Matthews

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.

8 phút
12/05/2025

Busting Myths with Facts for Myalgic Encephalomyelitis (ME/CFS) with Jaime Seltzer. World ME Day 2025

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 PacingWho gets ME/CFS?Children with ME/CFSAetiology / causes of ME/CFSSeverity in ME/CFSWhat ME/CFS is NOTPsychosocial impacts of chronic illnessBrief history of treatments that don't workDisease ManagementFinal 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

54 phút
ĐOẠN GIỚI THIỆU PHIM CỦA PHẦN 2

SEVERE & VERY SEVERE ME/CFS - in a nutshell

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

2 phút
ĐOẠN GIỚI THIỆU PHIM CỦA PHẦN 1

ME/CFS - Factitious or Real?

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

2 phút
ĐOẠN GIỚI THIỆU PHIM CỦA PHẦN 2

PEM and Pacing in ME/CFS - quick tips

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

1 phút
ĐOẠN GIỚI THIỆU PHIM CỦA PHẦN 2

What is Post Exertional Malaise - sneak peak

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

2 phút

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Know M.E. - where guest speakers talk about pressing issues surrounding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Post COVID conditions. Join researchers, clinicians, and patient advocates as we take a deep dive into the most recent, evidence-based information, so that you too can know M.E. Are you a GP? Sign up for the full News Series at www.anzmes.org.nz to apply for CME credits as you listen.

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