submission

Press release – ANZMES Submission: draft New Zealand Disability Strategy | Whaikaha

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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.

Press Release – ANZMES Urges Rejection of the Regulatory Standards Bill: “A Threat to Public Health and Equity”

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Release Date: 23rd June 2025

The Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) has lodged a formal submission opposing the Regulatory Standards Bill currently before the Finance and Expenditure Committee, warning that the legislation poses serious threats to public health, equity, and democratic governance.

While framed as a mechanism for improving legislation, ANZMES argues that the Bill prioritises corporate interests and economic efficiency at the expense of community wellbeing, Māori rights under Te Tiriti o Waitangi, and the government’s ability to protect its citizens.

“This Bill would codify neglect, lock in inequities, and diminish the government’s ability to act in the public interest,” said ANZMES President, Fiona Charlton.

Key concerns raised by ANZMES include:

  • Erosion of Public Health Protections: The Bill’s failure to include a public harm principle and its introduction of ‘takings’ provisions could deter life-saving regulations such as tobacco control, healthy housing, and pandemic preparedness.
  • Undermining Te Tiriti o Waitangi: The Bill promotes a narrow and universalist interpretation of “equality before the law” that disregards the Crown’s obligations to Māori. This risks dismantling targeted programmes essential for reducing health inequities.
  • Impact on the ME/CFS Community: With over 65,000 New Zealanders living with ME/CFS, ANZMES highlights how the Bill’s rigid economic framing would entrench the existing exclusion from disability supports, reduce funding for biomedical research, and block future policy progress.
  • Increased Bureaucratic Burden: For individuals with chronic illnesses like ME/CFS—many of whom experience cognitive and physical crashes following exertion—the Bill’s additional regulatory requirements would impose impossible barriers to engagement and justice.
  • Post-Viral Illness and Long COVID: With ME/CFS often triggered by viral infections, the Bill’s chilling effect on public health interventions could fuel a rise in disabling post-viral conditions and increase long-term health costs to the nation.

ANZMES calls for the complete rejection of the Regulatory Standards Bill, asserting that New Zealand needs compassionate, evidence-based regulation—not a framework that puts profits over people.

“This Bill won’t fix the system—it will freeze it in dysfunction,” said Charlton. “We need legislation that protects and uplifts our most vulnerable, not policies that entrench neglect.”

Ends.

For media inquiries, please contact, Angela Cayford:  

info@anzmes.org.nz | 03 471 6203

Press release – ANZMES Highlights Lessons from the COVID-19 Pandemic in Submission to Royal Commission

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For immediate release – 24th April 2025

ANZMES Highlights Lessons from the COVID-19 Pandemic in Submission to Royal Commission

ANZMES (The Associated New Zealand Myalgic Encephalomyelitis Society) has made a detailed submission to the Royal Commission of Inquiry into COVID-19 Lessons Learned, underscoring the need for equitable and inclusive public health measures in future pandemic responses.

Drawing on over 40 years of expertise supporting individuals with ME/CFS, ANZMES’ submission reflects the unique experiences and challenges faced by vulnerable populations during the pandemic. It emphasises actionable lessons to strengthen public health planning, safeguard chronic illness communities, and foster trust in healthcare systems.

Key insights from the submission include:

  • Addressing systemic gaps in vaccine safety protocols, adverse reaction reporting, and mandates, with tailored guidance for vulnerable populations like those with ME/CFS and post viral conditions.
  • Reinforcing the importance of equitable lockdown measures, including flexible service delivery and targeted mental health support for vulnerable populations, including chronically ill individuals.
  • Promoting inclusive design of testing, tracing, and public health technologies to ensure accessibility for populations with cognitive impairments and limited mobility.
  • Advocating for ongoing support for post-viral illnesses through the establishment of a Centre of Excellence, fostering research, education, and patient-centered care.

“The COVID-19 pandemic revealed critical gaps in the recognition and support of individuals with chronic illnesses, like ME/CFS and long COVID,” said Fiona Charlton, President of ANZMES. “Our submission calls for proactive and inclusive strategies to ensure that these populations are no longer overlooked in future public health crises.”

ANZMES’s submission reflects a steadfast commitment to advocating for systemic reform and fostering collaboration with policymakers, healthcare providers, and communities to build a resilient and equitable healthcare system.

Ends.

Understanding ME/CFS and long COVID
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a long-term, multi-systemic illness affecting the nervous, endocrine, autonomic, cardiovascular, and immune systems. It is often triggered by a viral illness and involves overwhelming fatigue and other symptoms that range in severity. Patients experience severe fatigue, post-exertional malaise (PEM), unrefreshing sleep, cognitive impairment, and orthostatic intolerance (to list a few). With over 100-200+ potential symptoms, the condition’s impact can vary greatly, making diagnosis and management highly individualised. Roughly 25% of all ME/CFS cases are categorised as mild, 50% as moderate-severe and 25% as very severe.

Long COVID (LC) is characterised by persistent, unexplained symptoms following infection with COVID-19 (SARS-CoV-2) lasting more than 12 weeks and not explained by an alternative diagnosis. Both conditions share symptoms such as extreme fatigue, cognitive dysfunction, and post-exertional symptom exacerbation (PESE), with up to 50% of long COVID cases fitting the diagnostic criteria for ME/CFS.

COVID developing to ME/CFS

Using data from a long COVID research initiative run by the US National Institutes of Health (NIH), the incidence of ME/CFS is now considered 15 times higher than pre-pandemic levels, and that people with a history of COVID are almost eight times as likely to develop the chronic condition. 

Post-Exertional Malaise (PEM) 

Post-Exertional Malaise (PEM), also referred to as post-exertional symptom exacerbation (PESE) in the context of long COVID, is a debilitating response to normal, every-day activities in people with ME/CFS. For individuals with severe-very severe ME/CFS or LC, this can be triggered by sensory overload, such as exposure to light or even simple conversations. Repeated episodes of PEM can exacerbate these already severe symptoms, and even minimal exertion can lead to significant setbacks for the patient’s health and wellbeing.

About ANZMES
The Associated New Zealand ME Society is the National Advisory on ME/CFS. Established in 1980, ANZMES has been at the forefront of research, representation, and education for ME/CFS in Aotearoa/New Zealand. The organisation’s expertise comes from its reputable medical team of advisors, which includes a world renowned expert and MNZM recipient, a fellow of the Royal NZ College of General Practitioners (RNZCGP) and a network of academic researchers, clinicians, and representatives from the ME community.

The organisation is a registered provider of continuing medical education with the Royal New Zealand College of General Practitioners (RNZCGP) and is dedicated to improving the lives of those affected by ME/CFS, long COVID, and associated conditions.

ANZMES is a founding member of the World ME Alliance, and a member of the Neurological Alliance NZ, long COVID Alliance, Carer’s Alliance, Disabled Person’s Assembly (DPA) and Access Matters.

The organisation’s vision is to live in a world where Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS), long COVID (and associated conditions) are recognised, supported, diagnosed early, treated effectively, and cured.

The vision focuses the organisation’s mission as the trusted leader to fund and generate robust Aotearoa research, represent the global voice, and educate through best practice to improve outcomes.

The vision and mission drive the organisation’s purpose as the leading National Advisory to produce and deliver quality, reputable, authoritative, evidence-based information, data, research, and education. We represent the needs of the community to ensure best outcomes are the primary focus of healthcare, legislation, and services that affect people living with ME, long COVID, fibromyalgia, and dysautonomia.

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