Tag: underserved groups

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

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 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 Māori, 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.

Source: Bowden N, McLeod K, Anns F, Catchpole L, Charlton F, Taylor B, Vallings R, Vu H, Tate W. 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. BMC Public Health. 2026 Apr 24. doi: 10.1186/s12889-026-27499-7. Epub ahead of print. PMID: 42032509. https://link.springer.com/article/10.1186/s12889-026-27499-7 (Full text available as PDF file)

Under-Served Groups and Myalgic Encephalomyelitis Research Workshop; Multiple Barriers to Effective Healthcare, Research and Public Participation

Abstract:

Public involvement in research and other initiatives for myalgic encephalomyelitis (ME) (also known as chronic fatigue syndrome) has been crucial in raising awareness of the disease and exposing inadequate healthcare and research funding. An online workshop on ME research and under-served groups took place in July 2024, organised by the first author, a person with ME. The workshop illustrated very low prevalence and thus barriers to healthcare as well as limited research in people from under-served groups, who appear doubly disadvantaged by their illness and their socioeconomic and/or ethnic background.

Three particular challenges were suggested to account for these disparities: stigma, lack of knowledge (within the general public, amongst healthcare workers and policy makers) and lack of power, particularly in improving current deficiencies. These challenges appear to be significant factors in preventing increased research funding and healthcare provision for ME generally.

We call on government and funding bodies to provide strategic funding to correct years of systemic under-resourcing. Widespread educational initiatives should alert healthcare workers and the public to the possible presence of ME in people from under-served groups. Research is now urgently needed to understand the barriers to diagnosis and care for people with this illness, particularly for those from under-served groups.

PATIENT OR PUBLIC CONTRIBUTION: The first author, a person with ME, was a patient representative on the government-initiated Research Working Group. As a result, she organised a series of online workshops on ME clinical research, attended by researchers, clinicians, charity representatives and people with ME. She directed the workshops and people with ME actively participated in the discussions. The last workshop examined ME research and under-served groups. The workshop was chaired by the third author and attended by the second author. The first author conceived the article and wrote it in consultation with the second and third authors.

Source: Bolton MJ, Chew-Graham CA, van Marwijk H. Under-Served Groups and Myalgic Encephalomyelitis Research Workshop; Multiple Barriers to Effective Healthcare, Research and Public Participation. Health Expect. 2025 Apr;28(2):e70214. doi: 10.1111/hex.70214. PMID: 40094174; PMCID: PMC11911926. https://pmc.ncbi.nlm.nih.gov/articles/PMC11911926/ (Full text)