26th September 2025 – For immediate release
In a formal submission to Whaikaha (Ministry of Disabled People), the Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) has responded to the draft New Zealand Disability Strategy 2026-2030 as part of the open public consultation, closing 28th September. ANZMES warns the strategy will fail tens of thousands of New Zealanders unless the government addresses fundamental systemic barriers and provides essential support for people with ME/CFS.
Despite meeting the government’s own definition of disability, ME/CFS is classified as a “chronic illness,” rendering patients ineligible for Disability Support Services (DSS). This exclusion also impacts the growing number of New Zealanders with Long COVID, as studies show up to 50% of them meet the diagnostic criteria for ME/CFS.
“This strategy’s aspirations for accessibility and equity are just words on a page for our community. We are dealing with a broken, top-down funding model that creates impossible barriers and leaves people to fend for themselves until their health deteriorates completely.” says ANZMES President, Fiona Charlton.
The submission argues that the core problem is a government funding model based on a predetermined budget rather than a true assessment of need. This forces Whaikaha to create narrow eligibility criteria that exclude conditions like ME/CFS, a situation compounded by the lack of data collection that makes these conditions invisible to policymakers.
“The current approach is an ‘ambulance at the bottom of the cliff’,” Fiona Charlton added. “Providing moderate support early can prevent people from declining to more severe levels, which is more compassionate and more fiscally prudent. The government cannot claim to have an equitable strategy while ignoring a significant portion of the disabled community.”
To create a truly inclusive and effective strategy, ANZMES urges Whaikaha to take a cross-cutting approach that addresses the specific needs of people with ME/CFS. The first and most critical step is to formally classify ME/CFS as a disability, which will ensure equitable access to essential services such as home help, mobility aids, and financial assistance. This must be supported by the implementation of comprehensive data collection and systematic coding for ME/CFS and Long COVID across health and social systems to inform a new, needs-based budget. Furthermore, the government must eliminate the current “postcode lottery” of care by committing to an urgent nationwide rollout of the Enabling Good Lives model. Support must also extend to investing in flexible employment, mandating disability competence training for key workforces, and developing specialised housing solutions with long-term residential care for the most severely affected individuals.
ANZMES is calling for a fundamental shift from an arbitrary budget to a system that identifies the true scale of need and funds it accordingly.