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
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:
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
Holly is a #GlobalVoiceForME this #WorldMEDay listen as she describes her lived experience with #myalgicencephalomyelitis #mecfs #chronicfatiguesyndrome
#globalhealthcrisis #worldhealthorganisation #worldhealthorganization #worldmealliance #anzmes #longcovid #longcovidrecovery
Cathy speaks as a #GlobalVoiceForME with 40 years lived experience with #myalgicencephalomyelitis #chronicfatiguesyndrome #mecfs
#WorldMEDay #worldmealliance #anzmes #worldhealthorganization #worldhealthorganisation #longcovid #longcovidrecovery #NursesDay #DisabilityDenial
Listen to Lou shed light on what needs to be done for people living with #myalgicencephalomyelitis as she joins us in shedding light on this #GlobalHealthCrisis
#GlobalVoiceForME #mecfs #longcovid #longcovidrecovery #NursesDay #WorldHealthOrganization
How many years have you been ill with ME/CFS? Some are newly diagnosed after remaining ill after contracting COVID-19, some have had ME/CFS for a few years, some for decades, some for almost their whole life. These people with ME are the #millionsmissing from schools, workplaces, and families. They are isolated. Now with COVID-19 being the number one trigger for ME/CFS surpassing Epstein Barr Virus, this is a #GlobalHealthCrisis with an estimated at least 55 million people unwell with this debilitating illness. Action needs to be taken now. Dedicated funding, research, and therapeutic interventions are needed now. Governments can no longer turn a blind eye to this increasing problem.
#WorldMEDay #GlobalVoiceForME #MECFS, #EMSFC, #MECVS, #pwME #MillionMissing #MyalgicEncephalomyelitis, #LongCovid #longcovidrecovery #dysautonomia #chronicfatiguesyndrome #DisabilityDenial #NursesDay, #IND2024 #OurNursesOurFuture #worldmealliance #anzmes
Olivia shares her lived experience as a former academic researcher. Listen as Olivia becomes a #GlobalVoiceForME for #MyalgicE awareness.
#WorldMEDay #globalhealthcrisis #worldmealliance #worldhealthorganisation #worldhealthorganization #anzmes #myalgicencephalomyelitis #mecfs #longcovid #longcovidrecovery
Tamara joins us as a #GlobalVoiceForME calling for more research and funding.
#GlobalHealthCrisis #myalgicencephalomyelitis #mecfs #chronicfatiguesyndrome #longcovid #longcovidrecovery #WorldMEAlliance #anzmes
Listen as Cath becomes a #GlobalVoiceForME this World ME Day, May 12, 2024.
Millions of people globally will relate to Cath's lived experience.
#WorldMEDay #worldmealliance #anzmes #worldhealthorganization #worldhealthorganisation #globalhealthcrisis #nursesday #myalgicencephalomyelitis #mecfs #longcovid #longcovidrecovery
Listen as Lauren talks about her lived experience with #myalgicencephalomyelitis #chronicfatiguesyndrome for World ME Day 2024. Lauren joins millions across the globe as a #GlobalVoiceForME to shed light on this #GlobalHealthCrisis#mecfs #longcovid #longcovidrecovery
Listen as Steve Murray, ANZMES Executive Committee member, describes the impact of long COVID on his and his family's life.
#GlobalVoiceForME #WorldMEDay #GlobalHealthCrisis #worldhealthorganization #worldhealthorganisation #myalgicencephalomyelitis #mecfs #longcovid #longcovidrecovery #worldmealliance #anzmes
Join ANZMES President Fiona Charlton and Vice President Ange Robinson as they unite as a #GlobalVoiceForME calling for more research and funding.
#GlobalHealthCrisis #myalgicencephalomyelitis #mecfs #chronicfatiguesyndrome #longcovid #longcovidrecovery #WorldMEAlliance #anzmes #worldhealthorganisation #worldhealthorganization
Know M.E. the podcast 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.
This episode features Professor Warren Tate speaking about international and Aotearoa / New Zealand biomedical research and understanding of ME/CFS and long COVID.
Disclaimer: ANZMES does not benefit from or receive any funds from any courses or products mentioned in this podcast episode. ANZMES does not provide medical advice directly to patients. Please always seek professional medical advice. This podcast is intended for health professionals seeking information on how to help patients with these conditions.
Health professionals can earn CME credits as they listen by subscribing to Know M.E. news at: https://forms.gle/ntH67hkz2S5Jj8xt7
For queries related to this Series contact: communications@anzmes.org.nz
For general enquiries please contact: info@anzmes.org.nz
ANZMES is the national advisory for ME/CFS in Aotearoa/New Zealand. ANZMES offers representation, information, national level support, and research funding. ANZMES is a RNZCGP registered provider for continuing education.
ANZMES is a nonprofit relying on the generosity of donors to continue its vital services. All executive committee members are unpaid volunteers. Donate today through the link provided so that ANZMES can continue crucial education, research, support, and advocacy.
www.anzmes.org.nz or www.givealittle.co.nz/org/anzmes
#myalgicencephalomyelitis #chronicfatiguesyndrome #longcovid #knowme #knowmenz #anzmes #longcovidrecovery #disability #healthequity #medicaleducation #continuingmedicaleducation #mecfs #disabilityinclusion #rnzcgp #neuroplasticity #healing #chronicpain #fibromyalgia #longcovidkids #advocacy #longcovidawareness #mecfsawareness #DisabilityDenial
Know M.E. the podcast 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.
This episode features Dr. Sarah Dalziel discussing dysautonomia and research findings. This presentation with slides was recorded for an ANZMES event in September 2022.
Disclaimer: ANZMES does not benefit from or receive any funds from any courses or products mentioned in this podcast episode. ANZMES does not provide medical advice directly to patients. Please always seek professional medical advice. This podcast is intended for health professionals seeking information on how to help patients with these conditions.
Health professionals can earn CME credits as they listen by subscribing to Know M.E. news at: https://forms.gle/ntH67hkz2S5Jj8xt7
For queries related to this Series contact: communications@anzmes.org.nz
For general enquiries please contact: info@anzmes.org.nz
ANZMES is the national advisory for ME/CFS in Aotearoa/New Zealand. ANZMES offers representation, information, national level support, and research funding. ANZMES is a RNZCGP registered provider for continuing education.
ANZMES is a nonprofit relying on the generosity of donors to continue its vital services. All executive committee members are unpaid volunteers. Donate today through the link provided so that ANZMES can continue crucial education, research, support, and advocacy.
www.anzmes.org.nz or www.givealittle.co.nz/org/anzmes
#myalgicencephalomyelitis #chronicfatiguesyndrome #longcovid #knowme #knowmenz #anzmes #longcovidrecovery #disability #healthequity #medicaleducation #continuingmedicaleducation #mecfs #disabilityinclusion #rnzcgp #neuroplasticity #healing #chronicpain #fibromyalgia #longcovidkids #advocacy #longcovidawareness #mecfsawareness #DisabilityDenial
