(NZ) Health, labour market, and social service outcomes for people with ME/CFS on a health or disability related benefit, 2026, Bowden et al.

[Dolphin]

OSF

osf.io

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

 

[SNT Gatchaman]

Published as —

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

Spoiler: Authors

Bowden, Nicholas; McLeod, Keith; Anns, Francesca; Catchpole, Leanne; Charlton, Fiona; Taylor, Barry; Vallings, Rosamund; Vu, Hien; Tate, Warren

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 a cohort of 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 cohorts: (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 study population included 1,902 individuals with ME/CFS. Compared to the general population, the ME/CFS cohort 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 cohort was disproportionately female and European, with notable underrepresentation of Maori, Pacific, and Asian ethnic groups.

CONCLUSIONS
People with ME/CFS on a benefit in NZ, while only representative of a small fraction of those affected by ME/CFS, still 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.

Web | DOI | PDF | BMC Public Health | Open Access

 

[Hutan]

With over 200 symptoms reported by ME/CFS patients, the disease has a very complex pathophysiology profile that not only makes it challenging for clinicians to provide effective healthcare (14, 15)

I don't think 'over 200 symptoms' is a good way to describe ME/CFS - it does nothing to help the credibility of the condition. It's a bit like if a medicines fixes every disease known, then it's probably snake-oil. A disease that causes 200 symptoms sounds unlikely.

Furthermore, ME/CFS often develops earlier in life compared to many other chronic health conditions, and is debilitating from day one, which
affects early life outcomes such as education and career development, leading to more profound lifelong consequences (26).

I thought this was a good point I haven't seen made often before. ME/CFS is more like an accident than a chronic illness that most people probably think of - there is no time to prepare, no typical pattern of gradual worsening.

The integrated data infrastructure (IDI), a large population-level research database, provides an opportunity to examine health and non-health
outcomes for people with ME/CFS in NZ. The IDI is managed by Stats NZ, contains linked individual-level data across multiple life domains for everyone who has ever been resident in NZ, and can be used for research that is deemed to be for the public good (37). However, the IDI does not have complete diagnosis information on people with ME/CFS, including no information from primary care, where diagnosis is generally made, restricting the identifiable ME/CFS population.

New Zealand's IDI database is potentially a fantastic source of information. However it seems that there are drawbacks when it comes to ME/CFS data, including that information from primary health care is not included. The approach of this paper was to look at people receiving a health or disability benefit and with an incapacity code of ME/CFS. These benefits are means tested on income, including joint income, which will exclude many people with ME/CFS.

The ME/CFS cohort was ascertained using Ministry of Social Development (MSD) data of all individuals receiving a health or disability-related benefit on 30 June 2022 with a primary or secondary incapacity code for ME/CFS (READ codes F286 and Eu4601). This cohort therefore comprises individuals who had been certified by a GP as being “incapacitated” and unable to work at that time and who met the income and asset eligibility criteria for a health or disability-related benefit.

Income-tested benefits are not only tested against the income of the individual, but also against the income of any partner they may have. As a result, individuals with ME/CFS who have a partner with moderate or full-time earnings are unlikely to meet eligibility criteria for benefit receipt. Consequently, the cohort identified here represents a subset of people with ME/CFS who both meet medical incapacity criteria and satisfy
relatively stringent joint income thresholds. In addition, prior to 2007, Work and Income medical certificates did not include detailed diagnoses
from doctors. Instead, a limited number of broad diagnostic categories were provided. Some people receiving health and disability-related
benefits still have these legacy codes recorded, which do not enable an ME/CFS diagnosis to be confirmed or excluded. As a result, we have
excluded all people with legacy codes from the analysis as it is not clear whether they have ME/CFS. This will result in a further undercount of the ME/CFS population.

 

[rvallee]

The approach of this paper was to look at people receiving a health or disability benefit and with an incapacity code of ME/CFS. These benefits are means tested on income, including joint income, which will exclude many people with ME/CFS.

And often mis-coded, sometimes to allow for disability to be accepted. Technically I think I am no longer on disability, but on welfare, and I don't think the information links back to the initial period of temporary ill-health support. I am also fairly sure that I am coded as fibromyalgia, probably with generic chronic fatigue, as I don't think the ME/CFS diagnosis exists here, or is so discouraged that my GP preferred not to code it properly. The assessors I spoke to on the phone opened up with something mentioning just fatigue, but I don't remember much. But I don't know what I'm coded with, we don't have this kind of access to our health data in Quebec. Everything about us in secret, behind closed doors.

Most likely most pwME have at least one such data distortion that removes the connection between illness and social income. All on purpose, of course, so they can look through records and struggle to find many such people. In biopsychosocial research, they loop around pretending to find crumbs of evidence they left behind. When it comes to recording reality, most just don't bother.

And since most studies find a roughly 90% misdiagnosis rate, it's pretty fair to do a 10x for any such data, and that still would under-estimate it.

 

[Hutan]

Yes, the study population is so highly selected by the hoops that have to be jumped through in order to qualify for this particular welfare benefit with the particular ME/CFS code, that I'm not sure that much can safely be concluded about people with ME/CFS in general.

The study population included 1,902 individuals with ME/CFS. Compared to the general population, the ME/CFS cohort 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%).

 

[Midnattsol]

I want to point out that registries can be poor even for recognized diagnoses such as cardiovascular events. For example someone may not code "stroke" but rather some other code for the functional limitation from the stroke that is the cause of the contact with the institution that supplies data to the registry.

It's likely worse for us though for numerous reasons, but at the same time some coding practices are really poor overall.