People living with chronic fatigue in Aotearoa New Zealand face substantial health challenges, limited access to support, and long-term economic hardship, a new University of Otago – Ōtākou Whakaihu Waka-led study has found.
Published in journal BMC Public Health, the nationwide study is the first in New Zealand to use linked population-level data to examine the health, labour market, and social service outcomes of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
Dr Nick Bowden
Lead author Dr Nick Bowden, of the Department of Paediatrics and Child Health, says the findings highlight a largely invisible population experiencing significant unmet need.
"ME/CFS is a complex and often debilitating condition, but it remains poorly understood and under-recognised. This study provides the first national picture of how people with ME/CFS are faring across multiple aspects of life, and the results are concerning," he says.
Using Stats NZ's Integrated Data Infrastructure, the research identified 1,902 working-age individuals receiving a health or disability-related benefit with a recorded ME/CFS diagnosis, and compared them to both other benefit recipients and the general population.
The study found people with ME/CFS had significantly higher health needs than the general population, including greater use of emergency departments and much higher levels of medication use.
Nearly one in three were dispensed 10 or more medications in a year, more than double the rate seen in the general population.
At the same time, access to more intensive disability support was extremely limited.
Only 1.6 per cent of the ME/CFS group accessed disability support services, substantially lower than the 7.2 per cent observed among other benefit recipients.
Fiona Charlton
This lower access to support occurred alongside significantly greater reliance on income support, with nearly two-thirds receiving the Supported Living Payment, and higher levels of long-term benefit receipt compared to other benefit recipients.
Co-author and Associated New Zealand ME Society President Fiona Charlton says this points to a mismatch between need and eligibility.
"Current support systems are not well designed for people with chronic, fluctuating conditions like ME/CFS. Many are effectively falling through the cracks."
The economic impacts were also stark. Just 18 per cent of people with ME/CFS were in employment, compared to more than 80 per cent of the general population.
Many showed long-term reliance on income support, with nearly half receiving a benefit continuously over five years.
"These findings reflect the profound and enduring impact ME/CFS can have on people's ability to work and participate in society," Ms Charlton says.
The study also highlighted inequities in diagnosis and access to support. The identified ME/CFS population was overwhelmingly European, with Māori and other groups underrepresented, likely reflecting barriers to diagnosis and services rather than true differences in prevalence.
Emeritus Professor Warren Tate
Co-author Emeritus Professor Warren Tate, of Otago's Department of Pathology and Molecular Medicine, says the findings highlight major gaps in awareness and understanding of ME/CFS across the health system.
"These data illustrate the need for much wider understanding of ME/CFS across all aspects of the health sector," he says.
"There is an urgent need for both education and understanding of research-based best practice for managing the debilitating effects of ME/CFS and Long COVID on affected patients among all ethnic groups across New Zealand."
Dr Bowden says improvements are urgently needed in diagnostic pathways, data collection, and service design.
He and fellow researchers also call for more integrated, person-centred models of care that reflect the complex and long-term nature of ME/CFS.
"Ultimately, this research is about making people with ME/CFS visible in the data and in policy," Dr Bowden says.
"We now have clear evidence of the challenges this group faces. The next step is ensuring that health and social systems respond appropriately."
