The Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) has lodged a formal submission with Medicines Control, calling for an urgent review of medication dispensing regulations that are causing significant harm to New Zealanders with chronic illnesses. This action follows a complaint from a community member to one of our ME/CFS organisations that was escalated to Medicines Control by the Health and Disability Commissioner’s office. As the National Advisory it is ANZMES’s responsibility to highlight the public interest in the issue.
The submission, written on behalf of the ME/CFS, Long COVID, and wider chronic illness communities, details how the current “one-size-fits-all” system creates severe financial, logistical, and health burdens for the country’s most vulnerable patients. It highlights the direct clash between rigid, frequent dispensing requirements and the medical realities of living with energy-limiting conditions that leave many housebound and/or bedbound. The member who submitted the original complaint to the Health and Disability Commissioner stated “I am disabled and cannot always drive. Not all of us can simply jump in a car to collect our medication.” This emphasises the lived experience of many with ME/CFS and other chronic conditions.
Under current regulations, many controlled drugs essential for managing complex symptoms have a maximum one-month prescription length, with dispensing often fragmented further into weekly lots. This forces patients who were previously stable on three-month prescriptions to now secure a new script every 30 days, tripling their costs and putting their health at serious risk for pharmacy trips.
The submission includes powerful patient testimonies, with one member stating they were refused essential medication one day early, leaving them without it for three days. Many patients, especially those with mobility issues, rely on caregivers or support workers to pick up essential medication who are not available for weekly or monthly pick-ups.
ANZMES is calling for a review of dispensing frequency and prescription length, fees and a patient-centred system that allows for flexible dispensing and clear exceptions for those in severe categories.
“This is not a request for special treatment – we are urging for equitable access to essential healthcare for some of New Zealand’s most vulnerable citizens” states Fiona Charlton, AZNMES President. “We have officially put this case to Medicines Control and await a response that prioritises the well-being of all New Zealanders.”
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.
On Friday, 1st August, ANZMES President Fiona Charlton and Vice President Ange Robinson attended Massey University researcher and artist Jessica Philbrick’s thought-provoking exhibition, “THERAPEUTIC LANDSCAPES: Paintings on Living with ME/CFS.” The exhibition is open to the public, running throughout August at the Square Edge Community Arts Centre. ANZMES proudly funded this unique exhibition as part of our 2024 Research Grants and Scholarships, reflecting our ongoing efforts to support creative and educational initiatives that raise awareness about ME/CFS. It features a series of original oil paintings, offering a window into the unseen daily struggles of individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
Exhibition Details:
Event Dates: 31st July – 31st August
Location: 47 The Square, Palmerston North
Additional Information: Further resources for education on ME/CFS will be available at the exhibition.
Jessica Philbrick, aged 29, has lived with mild-moderate ME/CFS since her teenage years and is currently completing her Masters in Arts (Psychology). She has combined her background to create original oil paintings based on interviews with people living with ME/CFS in New Zealand.
The artwork on poster: This painting depicts the space where *Kara spends the majority of her time due to living with CFS. Her bedroom space has been a crucial site for rest, healing, and safety when she is encumbered with CFS symptoms. Her bedroom is supportive because of the adjustable bed, cosy blankets, hot water bottle, automatic light timers, calming paintings, and sense of safety and tranquillity. *Pseudonym
Jessica Philbrick’s exhibition features five original works that illustrate how home environments serve as therapeutic spaces for symptom management and emotional well-being. Through paintings accompanied by personal stories, the exhibition explores the profound emotional, physical, and psychological complexities of living with ME/CFS. This work not only fosters understanding and dialogue among the general public but also offers valuable insights for health professionals on better supporting those with ME/CFS and other chronic illnesses.
Jessica says, “I am so thankful for the generous support from ANZMES towards exhibiting paintings. The sponsorship from ANZMES was incredibly helpful in disseminating the findings of my research and the stories from my participants out into a community platform. These paintings are about sharing experiences but also encouraging hope by opening a conversation around how the home can be used to be supportive, safe, enriching and healing.”
L-R Fiona Charlton, Jessica Philbrick and Ange Robinson on opening night.
It was Fiona and Ange’s pleasure to attend the exhibition’s opening to represent ANZMES’s commitment to engaging with the ME/CFS community and sharing these vital narratives with the broader public.
Fiona says “It’s a privilege for ANZMES to sponsor this powerful art exhibition and to attend opening night. We are especially proud to support the extraordinary artist, Jessica Philbrick, whose work shines a light on this invisible illness—raising awareness while contributing to therapeutic research.”
We encourage the public to attend, learn, and engage in meaningful conversation about the challenges faced by those living with ME/CFS.
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 (housebound) and 25% as very severe (bedbound).
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.
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.
On Severe ME Day, the Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) is issuing an urgent call for government action to address the systemic neglect of New Zealanders living with Severe and Very Severe Myalgic Encephalomyelitis (ME). ANZMES highlights that an estimated 25% of the 65,000 Kiwis with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – over 16,000 people – are housebound or completely bedridden, many requiring 24/7 care simply to survive.
Severe ME is a devastating, multi-systemic neurological illness that can leave individuals unable to tolerate light, sound, or touch. It can rob them of the ability to speak, eat, or perform any basic self-care. Despite the severity and scale of the crisis, these individuals remain largely invisible, trapped within their homes and failed by a healthcare system ill-equipped to meet their needs.
Fiona Charlton, ANZMES president states “Their suffering is compounded by a healthcare system that lacks the necessary expertise and facilities. On Severe ME Day, we are not just asking for awareness, we are demanding tangible commitments from MPs to provide safe, compassionate, and evidence-based care. Inaction is no longer an option.”
ANZMES is calling on policymakers to address this crisis by actioning specific, urgent changes:
Fund Dedicated Care: Establish funding for dedicated ME/CFS respite and long-term residential care facilities staffed by healthcare professionals trained by ANZMES in the specific needs of severe ME patients.
Mandate Education: Implement mandated ME/CFS education for all healthcare professionals to ensure safe, evidence-based practice and prevent the harm caused by inappropriate advice like Graded Exercise Therapy (GET).
Update Disability Policy: Formally include ME/CFS in all national disability support policies and frameworks, as recommended by the United Nations, to ensure access to essential support.
United Nations Committee on the Rights of Persons with Disabilities (CRPD. In its 2022 review, the Committee made a recommendation that the New Zealand government should: “Expressly include ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) in disability policy and practice, to ensure access for persons with ME/CFS to health care and disability services”.
As part of the campaign, ANZMES is running an InMEmory Tribute to honour the individuals who have been lost to ME/CFS and to acknowledge those currently living in profound isolation.
“Every name and country in our tribute represents a life devastated by this illness and a family left to navigate a broken system,” said ANZMES President. “Their lived stories are the reason we fight for a future where no one is left to suffer in silence.”
ANZMES urges the public, healthcare professionals, and policymakers to visit its website Severe ME Day 2025 to access critical resources and learn how they can support the urgent call for action.
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 (housebound) and 25% as very severe (bedbound).
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.
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.
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:
ANZMES, Aotearoa’s National Advisory on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), is proud to announce the launch of its 2025 Grant and Scholarship Programme for postgraduate students and academic researchers. The programme is aimed at supporting students who are interested in researching ME/CFS and long COVID. Marking the third consecutive year of this vital initiative, the programme continues its dedicated support for groundbreaking research into ME/CFS and the overlapping challenges of Long COVID within New Zealand.
ME/CFS is a debilitating chronic condition involving overwhelming ongoing fatigue. Although millions of people suffer with the illness worldwide there is remarkably little research or funding available.
ANZMES urges postgraduate students and academic researchers across Aotearoa to consider applying for the 2025 Grant and Scholarship Programme.
Fiona Charlton, ANZMES President, states, “As we enter the third year of our Programme, we are incredibly encouraged by the calibre of research from our previous recipients. The funding we are offering can provide crucial support for innovative projects, helping to pay for fees, study, living, or laboratory expenses, and ultimately improving the lives of those affected by these conditions.”
The 2024 recipients included:
Associate Professor Mona Jeffreys and Kahurangi Dey from Victoria University of Wellington, who were awarded a $25,000 grant for their project, “Exploring the Prevalence and Determinants of Food Insecurity in People with ME/CFS and/or Long COVID.” Their work also aims to contribute to an ME/CFS Registry in New Zealand.
Melissa Blanc from Auckland University of Technology, received a $5,000 scholarship for her systematic review titled, “Exercise in ME/CFS Patients: Helpful or Harmful?” This research addresses the ongoing debate surrounding exercise recommendations for ME/CFS patients.
Beth Hobbs from Victoria University of Wellington, was awarded a $5,000 scholarship for her project, “Psychological Support for ME/CFS Patients in Canterbury,” focusing on improving patient outcomes, particularly for those who are housebound.
The impact of this programme extends beyond a single funding cycle. Illustrating the progression of research fostered by ANZMES, Dr. Nicholas Bowden of the University of Otago, a 2023 grant recipient, has recently had his significant study on the experiences of individuals with ME/CFS in New Zealand submitted for peer review to BMC Public Health. This demonstrates the tangible contributions ANZMES-funded research is making to the broader scientific discourse. Read more here: Study provides data on life with ME | Otago Daily Times Online News
For the 2025 funding round, ANZMES is pleased to offer substantial support for researchers dedicated to advancing our understanding of ME/CFS and its intersection with Long COVID. The programme includes:
Two grants are being offered for postgraduate studies or academic research in either the Faculty of Science, Faculty of Medical and Health Sciences, Faculty of Public Health, or Faculty of Sport and Exercise Science to contribute towards the costs of laboratory analysis or for a research project on ME/CFS or ME/CFS and long COVID. Up to $25,000 per Grant may be awarded.
Four scholarship awards (up to a value of $5,000 each) will be offered to students to contribute towards the expenses of studying for a postgraduate degree in the Faculty of Health Sciences, Public Health or Humanities/Social Sciences for a student who can demonstrate financial project cost requirements or study expenses and who are conducting study/research on ME/CFS or ME/CFS and Long COVID.
Our funding programme is made possible by the support of our members.
Applicants will be selected by ANZMES on the recommendation of their Scholarships Committee.
Applications for 2025 opened 31 May and close on 31 July 2025.
Further information and application forms are available at:
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.”
