pressrelease

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

by

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.

PRESS RELEASE – ANZMES Calls for Equitable Tax Policies to Sustain Charitable Impact

by

ANZMES (The Associated New Zealand Myalgic Encephalomyelitis Society) has submitted a detailed response to the government’s consultation on tax exemptions for charities and not-for-profits (NFPs), urging them to support rather than hinder charitable efforts across Aotearoa/New Zealand. The submission highlights the urgent need to preserve critical tax relief measures for charitable organisations, ensuring that they can continue delivering essential services to vulnerable communities.

The response warns that taxing income from mission-aligned business activities, such as online stores or op shops, would jeopardise the financial sustainability of smaller charities. It could also reduce their ability to fund advocacy, education, and research initiatives for underrepresented conditions like ME/CFS.

“ANZMES exists to bridge gaps in understanding, support, and research for ME/CFS,” said Fiona Charlton, President. “We rely on innovative, mission-aligned funding solutions to fulfil our purpose. Taxing these efforts would divert resources away from the people who need them most.”

Key Points from ANZMES’ Submission:

1. Mission-Driven Income Should Remain Exempt:

   – Income from mission-aligned activities directly supports the organisation’s advocacy, education, and patient resources. Taxing this income would erode the charity’s capacity to deliver its mission.

2. Public Trust and Donor Confidence:

   – Taxing revenue risks undermining public trust in charities and donor intentions. Restricted funds like the Kathy Foley Trust, which supports diagnostic and emergency patient needs, exemplify the necessity of preserving exemptions.

3. Volunteer Contribution Recognition:

   – ANZMES depends on over 2,500 volunteer hours annually to provide cost-effective services. Imposing additional taxes on its income undervalues this societal contribution.

4. Equitable Tax Thresholds:

   – Current thresholds for charity business income exemptions, such as the $1,000 deduction, are outdated. ANZMES advocates for a higher exemption threshold to reflect the realities of small charities’ operations.

“We are committed to ensuring that New Zealand’s tax system reflects the values of fairness, inclusivity, and support for the community,” added Charlton. “Maintaining tax exemptions for mission-driven income is essential for the survival and growth of organisations like ANZMES, which play a vital role in addressing gaps in government and private sector support.”

ANZMES invites policymakers and the public to engage in meaningful dialogue to ensure that tax policies support, rather than hinder, charitable efforts across Aotearoa.

Ends.

PRESS RELEASE – Coalition Calls for Urgent Reforms to Stabilise Disability Support Systems and Address Inadequacies in Aotearoa

by

A united group of national advocacy organisations has made a comprehensive submission  calling for significant changes to Aotearoa/New Zealand’s Disability Support System (DSS). Their submission comes as part of the government’s consultation on stabilising and improving DSS, with a sharp focus on ensuring equity, transparency, and sustainability.

The coalition, representing a diverse range of conditions and communities, warns that the current DSS framework is neither equitable nor sustainable – failing many disabled individuals and their families. The group’s recommendations prioritise improving needs assessments, addressing service inequities, and providing flexible funding to support individual requirements. These reforms are critical for better aligning the system with the realities faced by those who rely on disability support services and ensuring that all those who meet the definition of disability receive the care they desperately need.

“This is a pivotal moment for addressing the inadequacies of the current DSS framework,” said Fiona Charlton, President of ANZMES. “We are calling on the Ministry to adopt a more inclusive, transparent, and responsive system that accounts for all individuals living with a disability, and their families.

Key Recommendations in the Submission:

1. Fair and Transparent Needs Assessment Processes: The coalition advocates for greater flexibility in assessment settings, improved pre-assessment communication, and tools that reflect the diversity and fluctuating nature of disabilities.

2. Recognition of Carers’ Needs: Acknowledging the essential role of carers and incorporating their financial, emotional, and physical wellbeing into the assessment process.

3. Flexible Funding Reform: Ensuring funding allocations address individual needs effectively, including technology, accessibility supports, and a clear appeals process for denied funding.

4. Addressing Service Gaps: Introducing equitable solutions to overcome the “postcode lottery” that leaves many regions underserved.

The coalition’s submission is further supported by the Critical Issues and Challenges in Current DSS: A Consumer Perspective, report sent to the Ministry in August 2024. This report amplifies the lived experiences of disabled individuals, carers, and whānau, underscoring the urgent need for reform.

“We cannot afford to overlook these issues any longer,” continued Charlton. “Disabled individuals and their families have waited far too long for a system that truly supports their needs. This is an opportunity for the government to show leadership and deliver meaningful reforms now and for future generations.

By addressing these issues now, the government has a chance to create a more equitable and inclusive system. This is about dignity, respect, and ensuring everyone in our community has the support they need to thrive.”

The coalition invites government officials, community leaders, and the wider public to review the submission and lend their voices to this critical advocacy effort. Together, we can create a Disability Support System that reflects the principles of kotahitanga—unity and inclusivity.

The coalition of organisations—including ADHD New Zealand, ANZMES, Autism New Zealand, Complex Chronic Illness Support, Ehlers-Danlos Syndromes New Zealand, Epilepsy New Zealand, Foetal Anti-Convulsant Syndrome New Zealand, FASD-CAN Incorporated Aotearoa, Rare Disorders NZ, and Tourettes Association of New Zealand—represents a diverse range of conditions that currently fall through the cracks of the existing DSS framework.

Ends.

PRESS RELEASE – Unified Advocacy Groups Amplify Consumer Voices in Disability Support Services Review

by

In a significant demonstration of unity, leading disability and advocacy organisations have come together to amplify the voices of consumers in the review of New Zealand’s Disability Support Services (DSS). This joint submission, sent to the review panel chaired by Sir Maarten Wevers, and including Leanne Spice, and Reverend Murray Edridge, speaks up about the urgent and critical need for inclusive and equitable disability support across the nation. The review has been prompted by budget concerns at Whaikaha for currently recognised conditions receiving these services. However, it is essential for the government and the review panel to acknowledge the broader disability landscape in New Zealand as there is far more disability that goes unrecognised and unsupported. Thousands of individuals who should be entitled to services are not receiving the necessary support.

The coalition of organisations—including ADHD New Zealand, ANZMES, Autism New Zealand, Complex Chronic Illness Support, Ehlers-Danlos Syndromes New Zealand, Epilepsy New Zealand, Foetal Anti-Convulsant Syndrome New Zealand, FASD-CAN Incorporated Aotearoa, Rare Disorders NZ, Stroke Foundation of New Zealand, and Tourettes Association of New Zealand—represents a diverse range of conditions that currently fall through the cracks of the existing DSS framework. This joint effort arises from the discontinuation of the Whaikaha DSS Eligibility Review Advisory Group, which previously served as a vital channel for direct consumer feedback from these organisations.

The submission brings to light several issues experienced by this coalition that urgently need to be addressed to create a fairer and more inclusive DSS.The termination of the Advisory Group has left a void in consumer representation. Incorporating consumer voices in the review process is essential to ensure that support services meet consumer needs, and are both equitable and inclusive. Current DSS criteria exclude many conditions that meet the New Zealand government and the United Nations definition as disabilities. This exclusion results in woefully inadequate support due to insufficient identification, coding, tracking, and funding.

Other key issues highlighted are significant regional disparities in service access due to the “postcode lottery” effect, necessitating integrated support systems across all regions. Systematic barriers, such as the need for high health literacy and effective communication with health professionals, disproportionately affect those with cognitive impairments or complex needs. The current system’s sole reliance on formal diagnoses delays support, creating inequities, particularly between paediatric and adult services. Fragmentation across government agencies results in inconsistent care and additional stress for individuals with disabilities, emphasising the need for better integration. Existing funding mechanisms are inadequate to meet the growing needs, requiring adjustments tied to inflation and increased government investment. Early identification and intervention strategies are crucial for preventing the progression of disabilities and improving long-term outcomes.

The submission recommends revising the DSS eligibility criteria to include a wider range of conditions recognised by the UN and New Zealand government definitions of disability, ensuring these are properly identified, coded and tracked. It calls for improved regional integration to eliminate the “postcode lottery” and silo funding effect, ensuring customer-focused, integrated, and equitable access to services across all regions. The application and assessment processes should be streamlined to be more accessible, particularly for those with cognitive impairments or severe fatigue. Enhancing the NASC processes is essential to reduce the administrative burden on individuals and create a more compassionate support system. Increased funding for DSS is advocated to support all eligible individuals, emphasising the long-term benefits and cost savings of early and consistent support across the life span. The development of integrated care pathways for early intervention services and the implementation of a centralised system for sharing information across agencies are crucial for cohesive care. Additionally, creating a “catch net” for individuals who fall through the cracks of the current system will ensure they receive necessary reassessment and support.

By considering these critical issues and implementing necessary changes in DSS criteria, Aotearoa New Zealand can move towards a more supportive and fair disability support landscape.

– – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – –

The organisations involved in this submission represent significant segments of the New Zealand population affected by various disabilities:

  • ADHD New Zealand: ADHD New Zealand estimates that around 280,000 people in New Zealand have ADHD, affecting approximately 2.4% of children aged 2-14 years. It is underdiagnosed in adults due to diagnostic criteria initially developed for children.
  • ANZMES (The Associated New Zealand Myalgic Encephalomyelitis Society) and
    Complex Chronic Illness Support:     There are approximately 25,000 – 45,000 people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and potentially over 400,000 when considering those who meet the criteria of long COVID induced ME/CFS.
  • Autism New Zealand: Approximately 93,000 people in New Zealand are on the autism spectrum, translating to about 1 in 54 people.
  • Ehlers-Danlos Syndromes New Zealand: There is likely to be 1:500 people with Ehlers-Danlos Syndrome however, they are currently rated 1:5000 due to lack of coding and tracking, leading to delays and misdiagnoses.
  • Epilepsy New Zealand: Epilepsy is a condition that affects 1 in 100 people, approximately 50,000 New Zealanders. 70% of people living with epilepsy gain good control on anti seizure medication however, 30% will not get control and this has long lasting effects.
  • FACSNZ (Foetal Anti-Convulsant Syndrome New Zealand): The exact prevalence is unknown due to the complexity of diagnosis and underreporting. However, the condition is recognised to be a significant risk for children exposed to anti-seizure medicines during pregnancy.
  • FASD-CAN Incorporated Aotearoa (Fetal Alcohol Spectrum Disorder – Care Action Network): Te Whatu Ora estimates that between 3 – 5% of people born each year may be affected by the effects of prenatal alcohol exposure each year. This implies that around 1800 – 3000 babies, approximately 8 babies per day, may be born annually with FASD.
  • Rare Disorders NZ: Approximately 300,000 New Zealanders, 6% of the population, live with a rare disorder, with half of these individuals being children. Rare disorders, which have a prevalence of 1 in 2,000, encompass over 7,000 distinct conditions, each with varying levels of support needs.
  • Stroke Foundation of New Zealand: An estimated 89,000 are currently living with the effects of their stroke. Over 10,000 strokes occur each year in New Zealand, making it the second-leading cause of death and a leading cause of adult disability.
  • Tourettes Association of New Zealand (TANZ): Tourette Syndrome affects approximately 1 in 100 school-aged children in New Zealand. Up to 85% of individuals with this disability experience co-occurring conditions such as ADHD, OCD, anxiety, and mood disorders​.

Malcare WordPress Security