Dolphin
Senior Member (Voting Rights)
Health, labour market, and social service outcomes for people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome on a health or disability related benefit: an Aotearoa | New Zealand nationwide cross-sectional study using the integrated data infrastructure
Nicholas Bowden 1,2 , Keith McLeod 3 , Francesca Anns 4,5 , Leanne Catchpole 6 , Fiona Charlton 6 , Barry Taylor 1 , Rosamund Vallings 6 , Hien Vu 1 , Warren Tate 7
1. Department of Paediatrics and Child Health, Dunedin School of Medicine, Ōtākou Whakaihu Waka | University of Otago, Ōtepoti | Dunedin, Aotearoa | New Zealand. 2. Te Kaupeka Oranga | Faculty of Health, Te Whare Wānanga o Waitaha | University of Canterbury, Ōtautahi | Christchurch, Aotearoa | New Zealand.
3. Kōtātā Insight, Aotearoa | New Zealand.
4. COMPASS Research Centre, Waipapa Taumata Rau | University of Auckland, Tāmaki Makaura | Auckland, Aotearoa | New Zealand.
5. School of Psychology, Waipapa Taumata Rau | University of Auckland, Tāmaki Makaura | Auckland, Aotearoa | New Zealand.
6. Independent researcher, Aotearoa | New Zealand.
7. Department of Pathology, Dunedin School of Medicine, Ōtākou Whakaihu Waka | University of Otago, Ōtepoti | Dunedin, Aotearoa | New Zealand.
Corresponding Author Nicholas Bowden 201 Great King Street, Dunedin, New Zealand 9016 +64 27 201 1151 nick.bowden@otago.ac.nz
Keywords Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Population data Health service utilisation Disability support services Labour market outcomes Chronic illness
Abstract
Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating chronic condition characterised by persistent fatigue and multisystem symptoms, often leading to long-term disability and socioeconomic disadvantage. In Aotearoa New Zealand (NZ)), little is known about the health, labour market, and social service outcomes of people with ME/CFS.
Methods:
We conducted a nationwide cross-sectional study using the Integrated Data Infrastructure (IDI) to identify working-age individuals (16–64 years) receiving a health or disability-related benefit with a recorded ME/CFS diagnosis. Outcomes were compared to propensity score- matched groups: (1) benefit recipients without ME/CFS, and (2) a general population not receiving any benefit. We examined sociodemographic characteristics, co-occurring conditions, health service utilisation, disability support use, employment and income, and benefit reliance.
Results:
The cohort included 1,902 individuals with ME/CFS. Compared to the general population, the ME/CFS group had significantly higher rates of emergency department visits (18.8% vs. 12.8%) and pharmaceutical use (32.8% vs. 14.2% for 10+ medications), and lower current employment (18.3% vs. 83.8%). Compared to other benefit recipients, those with ME/CFS had lower hospitalisation (11.2% vs. 20.9%) and disability support service use (1.6% vs. 7.2%), but higher rates of Supported Living Payment (64.7% vs. 49.0%) and long-term benefit receipt. The ME/CFS group was disproportionately female and European, with notable underrepresentation of Māori and other ethnic groups.
Conclusions:
People with ME/CFS on a benefit in NZ face substantial health burdens, economic vulnerability, and limited access to appropriate supports. The findings highlight systemic policy exclusions that disadvantage individuals with chronic, fluctuating conditions. Improved diagnostic coding, inclusive eligibility criteria, and integrated, person-centred care models are urgently needed to address inequities and support this underserved population