ME/CFS is a serious, growing health crisis in Aotearoa, intensified by Covid-19. Despite growing evidence and rising prevalence, NZ’s healthcare system and government remain largely unresponsive. Urgent action is needed to reduce suffering and economic loss.
Summary of article:
📈 Surge in ME Estimates
- ANZMES (ME Society) now estimates 65,000 people in Aotearoa may be living with ME/CFS – up from 25,000.
- This updated estimate uses international prevalence rates and includes anticipated post-Covid cases.
- If accurate, ME affects more people than rheumatoid arthritis, lupus, and multiple sclerosis combined in NZ.
⚠️ Awareness & Health System Gaps
- No official prevalence data exists in NZ; ME remains under-recognised in healthcare and public policy.
- Health services for ME are severely lacking — no dedicated ME clinics or specialists in the public system.
- NZ’s Health Ministry has no work programme or policy for ME or Long Covid.
🧬 What is ME/CFS?
- ME is a serious, long-term physical illness impacting energy, immune, and neurological systems.
- Post-Exertional Malaise (PEM) is the hallmark: symptoms worsen severely after minor activity.
- Around 75% of patients reduce or stop work; 25% are housebound or bedbound.
- WHO recognises ME as a physical disease since 1969; science shows distinct biological abnormalities.
🌫️ Covid-19’s Long Shadow
- Covid-19 is believed to be triggering many new ME cases, especially among those with Long Covid.
- Overseas, ME cases have spiked post-pandemic; NZ data is limited but Covid infection remains high.
- Long Covid and ME are not identical but overlap significantly, especially in post-viral symptoms.
❗ Ongoing Stigma and Misconceptions
- Some NZ health professionals still claim ME is psychological, despite decades of biomedical evidence.
- US expert Jaime Seltzer calls such views inexcusable and outdated.
🏥 Political Inaction
- NZ had only one inquiry into ME (in 2012), with no resulting change.
- No MP leadership or major funding; Long Covid clinics have been closed or never fully funded.
- Contrast with Australia, UK, US, Germany where research, inquiries, and clinics exist.
♿ Disability and Support Access
- ANZMES is calling for ME to be officially recognised as a disability.
- Many severely ill NZ patients get only 3 hours/day of caregiver support, despite needing full-time care.
- ME meets both NZ and UN definitions of disability.
💸 Economic Toll
- Estimated annual cost of ME in Australia: $14.5 billion AUD.
- Long Covid may cost NZ $2 billion/year (0.5% of GDP) in lost productivity.
- Germany estimates the combined ME and Long Covid cost at 1.5% of GDP.
🛠️ Call to Action
ANZMES recommends:
- Coding & tracking ME and Long Covid in the health system.
- Including both in national health research funding.
- Preventive measures like better vaccine access, clean indoor air, and masking.
- Recognising ME as a disability and scaling up support services immediately.