New NZ research shows what many of you already know: ME/CFS and hardship go hand in hand
A University of Otago-led study, published in BMC Public Health in May 2026, is the first in New Zealand to use linked national data to look at how people with ME/CFS are faring across health, work and social support. The researchers looked at 1,902 working-age people on a health or disability-related benefit with a recorded ME/CFS diagnosis, and compared them with other benefit recipients and with the general population.
What they found
- High health needs. People with ME/CFS used emergency departments more and took far more medications. Nearly one in three were dispensed 10 or more different medications in a year, more than double the general population rate.
- Very little disability support. Only 1.6% accessed disability support services, compared with 7.2% of other benefit recipients.
- Long-term financial hardship. Nearly two-thirds received the Supported Living Payment, and almost half were on a benefit continuously for five years.
- Very low employment. 18% were working, compared with more than 80% of the general population.
- Inequity in who gets diagnosed. The group was overwhelmingly European. The researchers believe Māori and other communities are underrepresented because of barriers to diagnosis and services, not because they are less affected.
What this means for you
- It isn’t you. If you’ve struggled to get support, been stretched financially, or felt like the system doesn’t fit your illness, this is now backed by national data. The researchers’ co-author described current supports as poorly designed for chronic, fluctuating conditions, with many people falling through the cracks.
- Your experience counts as evidence. One of the study’s stated aims is to make people with ME/CFS visible in data and policy. That kind of evidence is what moves funding and service design.
- Change is being called for. The researchers are calling for better diagnostic pathways, better data collection, more education across the health sector, and integrated, person-centred care.
What we’re doing
We’ll use this research in our advocacy, including submissions and conversations with decision-makers, to make the case for support that matches the reality of complex chronic illness. If you’re struggling with finances or access to support, please get in touch with us. We can’t fix the system overnight, but you don’t have to work through it alone.
Read the full article: https://www.otago.ac.nz/news/newsroom/chronic-illness-linked-to-hardship-study
