New Zealand organisations Call for Action to Support 65,000 New Zealanders Living with ME/CFS
May 12th marks World ME Day, a global initiative to raise awareness of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and challenge the myths that perpetuate stigma and hinder progress. This year’s theme, “Busting Myths with Facts,” highlights the urgent need to replace misconceptions with evidence-based understanding. Regional ME/CFS groups and organisations across New Zealand are joining forces to amplify this message and call for community support.
Debunking the Myths
Persistent myths about ME/CFS continue to marginalise patients and delay meaningful change. Here are some of the most common myths—and the facts that dispel them:
– Myth: ME/CFS is a mental health condition.
Fact: ME/CFS is a biological illness that disrupts the brain, immune system, and metabolism. It often begins after an infection, such as the flu or COVID-19.
– Myth: ME/CFS is just about feeling tired.
Fact: The defining symptom is Post-Exertional Malaise (PEM), a severe worsening of symptoms after even minor exertion.
– Myth: You can exercise your way to recovery.
Fact: Exercise can worsen symptoms and lead to long-term deterioration. Pacing is the recommended approach.
By sharing these facts, we can challenge stigma and foster understanding.
How You Can Help
New Zealand ME/CFS organisations are calling on communities to unite and take action this World ME Day:
- Raise Awareness: Share our social media posts, press releases, and website resources to spread the facts about ME/CFS. Use the hashtags #WorldMEDay #MEMythBusting #MEFacts to join the conversation.
- Support Blue Tea Sunday: Host or attend a Blue Tea event to raise funds for your local or national ME/CFS organisation.
- Contact Your Local MP: Advocate for systemic change by sending a lobby letter urging better recognition, funding, and care for ME/CFS.
- Fundraise: Organise community events to support regional and national ME/CFS groups in their advocacy and research efforts.
- Unite Together: Join us in standing in solidarity with the 65,000 New Zealanders affected by ME/CFS. Together, we can create a brighter future.
Why It Matters
ME/CFS affects individuals of all ages, genders, and backgrounds, yet systemic gaps in healthcare and persistent stigma leave many without adequate support. Regional groups are working tirelessly to address these challenges, but they need your help to amplify their efforts.
By taking action this World ME Day, you can help ensure that ME/CFS is recognized as a serious biological illness and that those affected receive the care and dignity they deserve.
Event: Interview with Jaime Seltzer
World ME Day 2025: Busting Myths with Facts! 🔬
Join us for an exclusive interview with Jaime Seltzer, Scientific Director at #MEAction, TIME100 Health honoree, and researcher at Stanford University. Jaime is leading groundbreaking projects in ME/CFS, Long COVID, and infection-associated chronic illnesses—bringing real change to medical education, research, and patient care.
🚀 What to Expect:
✅ Eye-opening insights into the Teach ME, Treat ME campaign
✅ Myth-busting facts that challenge outdated medical perceptions
✅ The latest research that’s transforming diagnosis and treatment
📅 Mark your calendars 12 noon May 12th & spread the word! 🗣️ 📢 Let’s dismantle myths and make #WorldMEDay a catalyst for change. Interview will be viewable on Facebook, YouTube, LinkedIn, and podcast platforms.
Join Us
Let’s unite to challenge the myths, champion the facts, and drive change. For more information, resources, and ways to get involved, contact your local ME/CFS group. Together, we can make a difference.
ANZMES – National Advisory on ME
Complex Chronic Illness Support
MECFS Canterbury and West Coast
Are you a Health Professional who wants to know more while earning CME?
Subscribe to ANZMES CME-accredited Know M.E. Series and receive the whole course in your inbox so you can learn at your own pace through short articles, case studies, and expert interviews. Then test your knowledge with short quizzes.
Listen to this CME-accredited webinar and Q&A with Dr. Cathy Stephenson and ANZMES President Fiona Charlton
Check out Best Practice for diagnosis and management of ME/CFS and associated conditions here: Best Practice
