ANZMES (Associated New Zealand Myalgic Encephalomyelitis Society Incorporated) is urging policymakers to reject the proposed repeal of the Plain Language Act, warning that the move would disproportionately harm individuals with cognitive impairments—including those living with ME/CFS, Long COVID, and other neurological conditions.
The Act, which ensures government communications remain clear and accessible, plays a vital role in enabling people with brain fog, processing difficulties, and language barriers to engage with essential information. If repealed, thousands of New Zealanders with cognitive disabilities will face heightened challenges in accessing healthcare, legal, and social services.
“Complex language is a barrier to participation,” says Fiona Charlton, President of ANZMES. “For people with ME/CFS, brain fog and cognitive fatigue make it difficult to process dense bureaucratic language. Plain English ensures they can understand government documents and access critical support without unnecessary hurdles.”
International research supports the effectiveness of plain language policies in reducing errors, improving compliance, and fostering transparency. Countries like Canada, the United States, and the UK recognise the importance of clear communication and have strengthened their commitment to accessible governance.
“Removing the Plain Language Act would be a step backward,” warns Charlton. “It’s not just about convenience—it’s about equity, human rights, and ensuring everyone has equal access to public information.”
ANZMES is calling on the Governance and Administration Committee to uphold the legislation and safeguard accessibility for disabled and neurodivergent communities.
Press release for immediate release – ANZMES (Associated New Zealand Myalgic Encephalomyelitis Society Incorporated) is calling on Pharmac to amend its eligibility criteria for COVID-19 antivirals, ensuring individuals with Infection-Associated Chronic Conditions (IACCs), such as Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and related conditions, are explicitly included. Without clear guidance, thousands of high-risk patients remain vulnerable to severe illness, prolonged health deterioration, and systemic barriers to treatment.
Research indicates that early antiviral intervention can reduce the risk of post-viral complications and prevent worsening of complex conditions such as ME/CFS, POTS, and Dysautonomia. Yet, the current eligibility framework fails to acknowledge the unique vulnerabilities of individuals with IACCs—despite their heightened risk of severe health outcomes.
“Many people with Long COVID and ME/CFS experience immune dysfunction and metabolic impairments that make them more susceptible to severe complications from COVID-19,” says Fiona Charlton, President of ANZMES “Denying them access to antivirals isn’t just an oversight—it’s a failure to recognise the long-term consequences of untreated infections.”
Further compounding the issue is the lack of plain language in Pharmac’s policies, which creates unnecessary hurdles for individuals with cognitive impairments such as brain fog. For those with ME/CFS, Long COVID, and similar conditions, navigating complex medical documentation is an added barrier to securing timely care. Advocates stress that simplifying healthcare communication is key to ensuring equitable access.
“We need clear, accessible policies that patients can understand and navigate without additional stress,” says Charlton. “For people with cognitive impairments, convoluted processes can mean the difference between receiving treatment and being left behind.”
Key recommendations include:
Explicit Inclusion in Eligibility Criteria
Amend the access criteria to specifically list IACCs among conditions qualifying for Paxlovid treatment.
Recognise the unique vulnerabilities of these conditions in the context of COVID-19 infection.
Expand Paxlovid eligibility to include people aged 30-50, where ME/CFS prevalence is highest.
Consider eligibility for teenagers and young adults, who are also at risk of infection-associated complications.
Assessing the feasibility of a lower-dosage option for children with ME/CFS and related conditions, ensuring those most vulnerable can receive timely intervention.
Clinical Discretion for Prescribers
Allow healthcare providers to exercise discretion in prescribing Paxlovid to individuals with IACCs based on clinical judgment.
Ensure prescribers are informed about the potential benefits of early antiviral intervention for these patients.
Public Health and Equity Considerations
Acknowledge the disproportionate impact of IACCs on marginalised communities, including Māori and Pasifika populations.
Ensure equitable access to antiviral treatments for all high-risk individuals, regardless of formal diagnostic classifications.
“This isn’t just about viral treatment—it’s about protecting vulnerable populations from further health decline,” says Charlton. “We urge Pharmac to act now to ensure access is equitable and effective for all who need it.”
ANZMES urges Pharmac to adopt these recommendations, preventing unnecessary health deterioration and ensuring individuals with chronic conditions receive the medical intervention they deserve.
Press Release – For Immediate Release – ANZMES (Associated New Zealand Myalgic Encephalomyelitis Society Incorporated) is urging Parliament to ensure the Medicines Amendment Bill prioritises accessibility, affordability, and patient-centered care—particularly for individuals living with chronic illnesses such as ME/CFS, Long COVID, and Fibromyalgia.
The bill introduces streamlined approval pathways for medicines recognised in international jurisdictions, a move advocates say should include alternative and off-label treatments that have demonstrated significant benefits for those with complex conditions. Currently, thousands of New Zealanders would like to rely on medications such as Low-Dose Naltrexone, B12 injections, and mitochondrial supplements to manage their conditions—yet these treatments remain largely inaccessible due to a lack of subsidies and formal funding pathways.
“The Government must recognise that early intervention and equitable access to medications aren’t just healthcare issues, but economic ones,” says Fiona Charlton, President of ANZMES. “By funding effective treatments, we can prevent complications, reduce hospitalisations, and empower patients to maintain their quality of life.”
Beyond financial barriers, systemic challenges such as medical stigma, complex bureaucratic processes, and unclear prescribing guidelines further limit access to essential care. People with cognitive impairments—such as those experiencing brain fog due to ME/CFS and Long COVID—face additional difficulties navigating complex medical documentation and policy frameworks. Advocates argue that government communication must prioritize plain language to ensure health policies remain accessible for all.
“Healthcare should not require a medical degree to understand,” states Charlton. “For individuals with brain fog or processing difficulties, plain language is crucial. If policies and funding pathways are too convoluted to navigate, then the system is failing the very people it exists to serve.”
ANZMES is calling for:
Funding for off-label treatments proven effective for chronic illnesses.
New Zealand-led research investment to improve evidence-based treatment guidelines.
Clear prescribing and funding pathways for alternative medicines.
Alignment between medicine funding and disability reforms to ensure holistic care.
Commitment to plain language communication for accessible healthcare policies.
“This is an opportunity for Parliament to lead with innovation, compassion, and equity,” says Charlton. “We urge policymakers to support reforms that prioritise patient needs, ensure affordability, and recognise the real-world impact of medical barriers on vulnerable communities.”
Watch Glenys Rumsey speak to Breakfast, alongside ANZMES President Fiona Charlton here (9 minutes):
At 12 noon, visit ANZMES YouTube channel, Facebook or LinkedIn page to hear Jaime Selzter from #MEAction speak (1 hour) about ME/CFS, diagnosis, severity, psychologising, and more.
Join the ANZMES Executive Committee as we ask the government to transform lives:
Journalist Lisa Davies will also cover ME/CFS on the 6 o’clock news TVNZ tonight. Stay tuned!
We’re seeing a sharp rise in cases globally. Some studies suggest prevalence has increased up to 15-fold and that nearly half of all people with long COVID meet criteria for ME/CFS. Some say it is now 1 in 22 people. While it may not be quite as dramatic here in Aotearoa, due in part to our early border controls, our estimates suggest the number has jumped from around 25,000 to a conservative 65,000, meaning thousands more are now living with this debilitating condition.
Since the pandemic, ME/CFS has gained more media attention, and increased research—particularly through long COVID funding, since both are infection-associated chronic conditions. But despite this progress, awareness is still lacking, especially for severe and very severe forms, like what Tammy and Rhiannon experience.
Raising awareness is crucial —but there’s still a long way to go. Healthcare professionals and policymakers need to be fully informed to ensure best practice guidance is followed in healthcare and policy decisions, including access to vital support services.
The government has not implemented reclassification despite ME/CFS meeting the government definition and the United Nations definition of disability. Even though, after our petitions, back in 2012 the Health Select Committee recommended reclassification and in 2023 advised Whaikaha to amend eligibility criteria for people with ME/CFS to access disability support services. This has not happened.
We’ve had two explanations for why ME/CFS still isn’t officially recognised as a disability. The first came from Health NZ the Chief Executive of Allied Health, speaking to the Health Select Committee on behalf of Te Whatu Ora. They claimed that the same support services are already available under Long Term Conditions. But in reality, that’s just not how it plays out for people with ME/CFS. The condition’s severity is often overlooked. NASC assessments for home help are designed for people either over 65 or requiring 24/7 care. But even those at that severe end only receive 21 hours of care per week—despite needing round-the-clock support.
The second explanation – and a vital clue as to why there’s been no change – came from Whaikaha during the Advisory Panel on eligibility criteria which ANZMES was a part of—before the new government disbanded it. They admitted that there simply wasn’t enough funding to include everyone who meets the definition of disability in DSS. In fact, Whaikaha was told it had overshot its budget and needed to cut costs.
What this really tells us is that the government has no idea how much funding is actually needed to support every disabled person in Aotearoa. But the solution is simple—they need to talk to us, listen to what’s required, and increase the budget accordingly.
If ME/CFS were officially recognised as a disability, it would bring much-needed legitimacy to the condition—hopefully putting an end to outdated and harmful ideas that it’s psychological.
For those at the very severe end, like Tammy, they can get 21 hours per week. But that leaves families taking on full-time care at enormous personal and financial cost. This disrupts entire families – leading to loss of income and independence, like we see in Glenys’s case. So more funding is required there.
But reclassification would also help the moderate-severe who currently don’t qualify for ANY home help but desperately need it to prevent their condition from worsening. We know that early intervention and appropriate support improve outcomes and would stop more people from ending up very severe.
This isn’t just about recognition—it’s about ensuring people get the care they need NOW before it’s too late. The cost of doing nothing is an increase of people requiring round-the-clock support, and the government has a responsibility to prevent this.
ANZMES Urges Leadership to Reclassify ME/CFS and Launch Collaborative Initiatives for New Zealanders
May 12th, World ME Day, marks a pivotal moment to drive systemic change for over 65,000 Kiwis affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and related post-viral conditions. Amid the growing shadow of Long COVID, the Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) highlights the urgent need for equitable recognition, research, and resources.
The Crisis:
ME/CFS, often overlooked and underfunded, devastates mobility, cognitive function, and quality of life. An alarming 50% of Long COVID sufferers meet ME/CFS criteria, compounding challenges for a vulnerable population.
The Cost of Inaction: Failing to address ME/CFS carries significant consequences for individuals, families, and society. Without immediate action, the healthcare system will continue to bear the heavy burden of unrecognised and untreated cases, leading to increased hospitalizations and prolonged disability. Moreover, the economic cost of lost productivity and caregiving responsibilities places unnecessary strain on communities and the wider economy.
ANZMES’ Proposals for Change:
Formal Partnership for Excellence: Collaborate with ANZMES to establish a Centre of Excellence, prioritising gold-standard care, research, and education.
Cross-party Group Formation: Introduce a dedicated parliamentary group to harmonise national policy with global best practices.
Disability Reclassification: Align New Zealand with international standards to guarantee fair access to essential supports.
Addressing Systemic Gaps: Research underscores that individuals with ME/CFS suffer from significantly reduced health-related quality of life, ranking even lower than those with depression or multiple sclerosis. Despite this, New Zealand’s current healthcare system is marked by critical gaps, including:
Recognition Deficit: ME/CFS is not consistently acknowledged as a debilitating condition, leading to inequities in access to care and support services.
Outdated Treatment Protocols: Reliance on ineffective or disproven approaches leaves patients vulnerable to harm.
Limited Specialist Resources: Many regions lack trained professionals and specialized facilities, disproportionately affecting rural and underserved populations.
Underfunded Research: New Zealand trails behind in funding biomedical research for ME/CFS, delaying advancements in care.
Fragmented Collaboration: Poor coordination between healthcare providers and policymakers limits the development of cohesive, patient-centered strategies.
ANZMES President, Fiona Charlton, calls on policymakers to act decisively: “The voices of 65,000 New Zealanders cannot be ignored. This World ME Day, let’s ensure that ME/CFS care transforms from marginalised to world-leading.”
ANZMES, the National Advisory on ME/CFS (and associated conditions), is spearheading a campaign calling for urgent government action to address systemic healthcare gaps and improve the quality of life for these vulnerable populations.
Research underscores that individuals with ME/CFS suffer from significantly reduced health-related quality of life, ranking even lower than those with depression or multiple sclerosis. Despite this, many in New Zealand face inadequate medical support, outdated treatment protocols, and a lack of specialised facilities—leaving the most severely affected without essential care.
Drawing Inspiration: Examples of Global Success: Transformative change is possible. Internationally, countries like Norway, Australia, and the UK provide compelling examples:
In Norway, dedicated funding for biomedical research into ME/CFS has accelerated advancements in diagnostics and treatment.
The United Kingdom has recognised post-viral illnesses, including ME/CFS, as a public health priority, establishing support frameworks and raising awareness. The All-Party Parliamentary Group (APPG) has driven reforms in care pathways and funding allocations, enhancing access to resources and recognition of ME/CFS within the NHS. These initiatives demonstrate that meaningful progress can be achieved through robust policy, funding, and stakeholder collaboration.
In Australia, the government committed $1.13 million to Emerge Australia to integrate ME/CFS into healthcare, research, and education. This funding supports sustained advocacy and elevates ME/CFS care into national health policy frameworks.
In New Zealand, the Government’s engagement with Rare Disorders NZ, forming a cross-party parliamentary group, demonstrates a pathway for structured partnerships that could be emulated with ANZMES for addressing policy and practice for ME/CFS and post-viral conditions.
Join Us: Let’s Drive Change
ANZMES stands ready to collaborate with decision-makers. Together, we can uplift lives and set a global benchmark in ME/CFS care.
This year, ANZMES invites its members, allies, and the broader public to join the campaign by sending lobbying letters to their local MPs or relevant portfolio ministers. These letters advocate for tangible change and highlight the immediate need for improved disability support and healthcare access. A draft letter is available on our website, guiding members on how to amplify their voices effectively.
Charlton emphasises, “We cannot afford another year of inaction. On World ME Day, we urge the government to prioritise the health and dignity of all New Zealanders with ME/CFS and Long COVID.”
We encourage everyone to stand in solidarity with those affected by ME/CFS. Together, we can create a system that supports and uplifts those in need. For more details and to access resources, visit www.anzmes.org.nz or contact us at info@anzmes.org.nz.
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 catastrophic debilitation with symptoms that range in severity. Patients experience severe exhaustion, 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.
Ends.
Read the full Transforming Lives Report (sent to MPs) here:
Contact Your Local MP: Advocate for systemic change by sending a lobby letter urging better recognition, funding, and care for ME/CFS. You can use this template:
The Aotearoa New Zealand Myalgic Encephalomyelitis Society (ANZMES) has released a call to action urging healthcare providers to advocate for equitable policies and compassionate care for patients living with chronic illnesses such as Myalgic Encephalomyelitis (ME/CFS), Long COVID, and other complex conditions.
The NZ Doctor Rata Aotearoa published the opinion piece by ANZMES president, Fiona Charlton, on Tuesday 29th April 2025, with content available exclusively to subscribers.
A poignant example of the challenges faced by vulnerable patients is the case of Rhiannon Purves, who has ME/CFS and dysautonomia. During a prolonged hospital stay, she was subjected to New Zealand’s hospital benefit reduction policy, which drastically reduced her weekly benefit to $56.58, leaving her unable to afford critical living expenses.
“This policy imposes severe financial and emotional hardships on hospitalised individuals, often compounding their medical challenges,” says Fiona Charlton, President of ANZMES. “Doctors have an essential role in advocating for their patients by championing policy change, assisting with bureaucratic processes, and addressing systemic inequities.”
The pressing need for action extends beyond policy reform. Patients with ME/CFS and Long COVID frequently encounter systemic care gaps, including misdiagnoses and outdated treatment protocols that worsen their conditions. ANZMES highlights practical steps for healthcare providers, including:
– Writing detailed advocacy reports to ensure patients receive necessary care and support.
– Participating in Continuing Medical Education (CME) training on ME/CFS, available through ANZMES’s Know M.E. Series and My Health Hub.
– Supporting initiatives like ANZMES’s petition to abolish benefit cuts after 13 weeks of hospitalisation.
“Doctors are not only caregivers but also key advocates for systemic change,” says Charlton. “By supporting vulnerable patients, healthcare providers can drive policies that prioritize fairness, inclusivity, and improved care outcomes.”
ANZMES invites healthcare professionals and the broader community to join their efforts by signing the petition on Action Station and engaging with educational resources to better understand ME/CFS and Long COVID.
Together, we can reimagine a healthcare system where no patient is left behind.
New Zealand organisations Call for Action to Support 65,000 New Zealanders Living with ME/CFS
May 12th marks World ME Day, a global initiative to raise awareness of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and challenge the myths that perpetuate stigma and hinder progress. This year’s theme, “Busting Myths with Facts,” highlights the urgent need to replace misconceptions with evidence-based understanding. Regional ME/CFS groups and organisations across New Zealand are joining forces to amplify this message and call for community support.
Debunking the Myths
Persistent myths about ME/CFS continue to marginalise patients and delay meaningful change. Here are some of the most common myths—and the facts that dispel them:
– Myth: ME/CFS is a mental health condition.
Fact: ME/CFS is a biological illness that disrupts the brain, immune system, and metabolism. It often begins after an infection, such as the flu or COVID-19.
– Myth: ME/CFS is just about feeling tired.
Fact: Exercise can worsen symptoms and lead to long-term deterioration. Pacing is the recommended approach.
– Myth: You can exercise your way to recovery.
Fact: The defining symptom is Post-Exertional Malaise (PEM), a severe worsening of symptoms after even minor exertion.
By sharing these facts, we can challenge stigma and foster understanding.
How You Can Help
New Zealand ME/CFS organisations are calling on communities to unite and take action this World ME Day:
Raise Awareness: Share our social media posts, press releases, and website resources to spread the facts about ME/CFS. Use the hashtag #WorldMEDay [insert others] to join the conversation.
Support Blue Tea Sunday: Host or attend a Blue Tea event to raise funds for your local or national ME/CFS organisation.
Contact Your Local MP: Advocate for systemic change by sending a lobby letter urging better recognition, funding, and care for ME/CFS.
Fundraise: Organise community events to support regional and national ME/CFS groups in their advocacy and research efforts.
Unite Together: Join us in standing in solidarity with the 65,000 New Zealanders affected by ME/CFS. Together, we can create a brighter future.
ME/CFS affects individuals of all ages, genders, and backgrounds, yet systemic gaps in healthcare and persistent stigma leave many without adequate support. Regional groups are working tirelessly to address these challenges, but they need your help to amplify their efforts.
By taking action this World ME Day, you can help ensure that ME/CFS is recognized as a serious biological illness and that those affected receive the care and dignity they deserve. Learn more at: anzmes.org.nz/world-me-day/myth-busting-world-me-day-2025/
Join Us
Let’s unite to challenge the myths, champion the facts, and drive change. For more information, resources, and ways to get involved, contact your local ME/CFS group. Together, we can make a difference.
ANZMES (The Associated New Zealand Myalgic Encephalomyelitis Society) is proud to announce its detailed submission to the Ministry of Health as part of the consultation on modernising health workforce regulation in New Zealand. This important initiative represents a key opportunity to advocate for a healthcare system that prioritises equity, inclusivity, and patient-centred care.
In our submission, ANZMES emphasised the pressing need for systemic change, outlining practical and impactful solutions to enhance healthcare delivery for individuals with ME/CFS and other underserved communities. Key recommendations included:
Establishing integrated care models to support patients with complex conditions.
Implementing patient feedback mechanisms to ensure healthcare policies align with patient needs.
Advancing awareness through public campaigns about ME/CFS and related conditions.
Promoting mandatory upskilling and education through CME-accredited evidence-based programmes and resources.
Championing the creation of a Centre of Excellence for ME/CFS, a transformative initiative to drive research, education, and patient advocacy.
ANZMES also addressed key consultation questions, advocating for inclusive regulation that upholds safety while fostering workforce sustainability. Our recommendations included streamlining processes for overseas-trained professionals and supporting culturally responsive care practices to address the unique needs of Māori, Pasifika, tangata whaikaha disabled, and other underserved populations.
“Systemic healthcare reform is not just about meeting today’s challenges—it’s about ensuring a sustainable, inclusive system for generations to come,” said Fiona Charlton, President at ANZMES. “This submission reflects ANZMES’s unwavering commitment to driving positive change for all New Zealanders.”
We encourage our community and supporters to stay engaged as this important consultation progresses. Together, we can create a healthcare system that serves everyone with fairness, compassion, and innovation.
Ends.
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.
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.
Petition Gains Momentum to End Benefit Cuts for Hospitalised Individuals, Highlighting the Story of Rhiannon Purves
Advocates across New Zealand are calling on the government to urgently review a policy that reduces benefits to $56.58 per week for individuals hospitalised for over 13 weeks. This policy has left vulnerable individuals, like 34-year-old Rhiannon Purves, unable to afford essential medications and personal items while battling severe illness.
Photo Source: Re news
Rhiannon, who suffers from ME/CFS, was bedridden in Wellington Hospital for months. Her benefit was slashed from $480 to $55 per week, leaving her unable to meet basic living expenses. Advocates say this automated reduction process exacerbates the suffering of those already facing immense physical and emotional challenges.
Advocates are urging the government to:
1. End the automatic reduction of benefits for hospitalised individuals.
2. Implement a case-by-case review process to assess individual needs.
3. Ensure financial security for all, regardless of their circumstances.
“This policy punishes people when they are at their most vulnerable,” said Fiona Charlton, ANZMES President. “We need a welfare system that protects, not penalises, those who rely on it during critical times.”
Even when patients are gravely ill and hospitalised, their financial obligations do not pause. Mortgages, rent, insurance premiums, subscription fees, and other living expenses continue to accumulate. For those in shared accommodations, contributions toward utility bills must still be made—unlike individuals living alone, who might have the option to disconnect services temporarily.
Additionally, many patients as severely unwell as Rhiannon are unable to consume hospital-provided meals. Instead, they rely on liquid nutrition and essential supplements, leading to ongoing expenses even while confined to the hospital.
Patients like Rhiannon often face the additional burden of purchasing essential medications privately because the hospital system fails to provide the necessary prescriptions. This issue arises when hospital doctors either misattribute complex medical conditions to psychological causes or fail to fully understand associated conditions, leading to the omission of crucial treatments. In many cases, these medications are consistently prescribed by GPs who recognise and address their patients’ needs. However, the lack of alignment within the healthcare system forces patients to bear unnecessary financial and health burdens for treatments that should be accessible through public healthcare. Cutting benefits under such circumstances only exacerbates an already untenable situation, as $56.58 per week is grossly inadequate to cover even the most basic living and medical expenses.
