A new University of Otago-led 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), and found they are largely “invisible”.
The complex illness causes extreme fatigue, difficulty concentrating, slow information processing, short-term memory loss, increased sensitivity to light, sound, odours and certain foods, headaches, muscle twitches, tingling or numbness, disrupted sleep cycles, dizziness, nausea, muscle aches, joint pain and flu-like symptoms.
Lead author and University of Otago paediatrics and child health researcher Dr Nick Bowden said the findings highlighted 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 said.
Using Stats NZ data, 1902 working-age individuals with a recorded ME/CFS diagnosis, were found to be receiving a health or disability-related benefit.
They were compared to other benefit recipients and the general population, and it was found that 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.
At the same time, access to more intensive disability support was extremely limited.
Only 1.6% of the ME/CFS group accessed disability support services — substantially lower than the 7.2% observed among other benefit recipients.
Dr Bowden said 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 said this pointed to a mismatch between need and eligibility.
Many were ‘‘falling through the cracks’’ because support systems were not well designed for people with chronic, fluctuating conditions like ME/CFS, she said.
The economic impacts were also stark, with just 18% of people with ME/CFS in employment and many showed long-term reliance on income support — nearly half received a benefit continuously over five years.
Ms Charlton said it reflected the profound and enduring impact the condition could have on people’s ability to work and participate in society.
Dr Bowden said improvements were urgently needed in diagnostic pathways, data collection, service design and 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.’’
