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.
8th September 2025 – Clarification Regarding the ANZMES Statement Released on 20 August 2025
We want to acknowledge the concerns raised in response to our recent statement. It was never our intention to cause confusion or distress, and it is regretful that some members of the community interpreted the statement as an endorsement of specific techniques or providers, including the Lightning Process or therapies based on it. We want to be clear: ANZMES does not endorse the Lightning Process, any therapies based on it, or any non-evidence-based intervention.
All members of the ANZMES Executive Committee are directly impacted by ME/CFS—either personally, through loved ones, or professionally. We care deeply about the ME/CFS and Long COVID communities. We walk alongside you in these challenges, and our advocacy is rooted in lived experience, compassion, and a commitment to scientific integrity.
As the National Advisory on ME/CFS, ANZMES remains committed to:
Upholding international best practices, including the NICE 2021 guidelines
Providing evidence-based education and resources
Supporting all members of our community, regardless of the paths they’ve explored
Why the Statement Was Made
The original statement was created in response to reports that a provider and some community members had received defamatory, abusive, and threatening messages. This behaviour is unacceptable and could lead to the sender facing police or legal action. We want to reiterate:
ANZMES does not condone abuse, threats, or harassment—towards anyone, inside or outside the ME/CFS and Long COVID communities
Mentioning a provider does not imply endorsement or alignment.
We do not endorse the Lightning Process, any therapies based on it, nor any technique that lacks a robust evidence base.
We support the sharing of all experiences—including recovery, improvement, harm, and decline—as part of a balanced and inclusive narrative.
We are committed to supporting all members of our community, regardless of the techniques they’ve tried or the outcomes they’ve experienced.
We remain committed to correcting past misinformation and protecting the reputation of our communities as reputable sources of our own experience, research, and knowledge.
Our Position on Improvement or Recovery Stories
We recognise that commonly agreed upon international statistics, report a small percentage of people (~5%) show genuine improvement or recovery but from no single identifiable intervention.
However, these stories (alongside accounts of worsening or decline, or no change) when shared respectfully and transparently, can provide a balanced perspective that may contribute to a broader understanding of ME/CFS and Long COVID. However, ANZMES is not making recommendations in favour of any specific treatment, technique, or provider.
We encourage individuals to:
Do their own research
Consult ME-aware health professionals
Make informed decisions based on international best practice
We will continue to share robust evidence-based up-to-date information on best practice guidelines and support all members of our community—regardless of the choices they make or the outcomes they experience.
21st August 2025 – Statement:
ANZMES supports our members and community in sharing both their stories of improvement and recovery or the harmful effects, regardless of the type of treatment or approach that has helped or not helped them. We believe people should be able to share these experiences openly and without fear of retaliation or rejection.
As an organisation ANZMES recognises and follows the NICE October 2021 guidelines and does not rely on any methods that are not evidence-based. Whilst we do not make broad recommendations, we do however, respect the right of our members and community to seek out their own treatments and to share their personal stories.
We welcome hearing about improvement and recovery experiences. We do not support and we condemn any bullying, negative commentary, doxxing, spamming, or abuse directed towards individuals who choose to pursue these techniques, or towards the providers offering them.
We ask that respect be extended to those who have experienced recovery. Their journey is personal and valid, and their story deserves to be heard without judgment. At the same time, we encourage individuals sharing recovery experiences to do so with sensitivity, acknowledging that ME/CFS affects people in diverse and complex ways.
Choosing not to pursue a particular treatment or approach does not reflect a lack of desire to recover—it simply represents a personal decision based on individual circumstances, health status, lived experience, and the valuing of evidence-based methods and international standards.
We strongly reject gaslighting or dismissive comments such as “they must not have been sick” or “they must not have had ME/CFS” in response to someone’s recovery. These statements are harmful and ignore the heterogeneity of the condition. It is important to remember that ME/CFS includes multiple subgroups, and while a small percentage of individuals may recover to near pre-illness levels, many more do not, despite trying numerous interventions. We celebrate improvements where they occur, while holding space for those whose journey continues with ongoing challenges.
We also welcome feedback and experiences where the outcomes of any techniques or treatments produce a worsening of functional capacity. This is to ensure a scientific approach, where all experiences, regardless of outcome, are received, to produce a well-rounded understanding of subjective outcomes.
ANZMES also wishes to clarify that, in the past, we published that Mel Abbott is a Lightning Process practitioner. This is no longer the case. The Switch, run by Mel Abbott, through her private business: Empower Therapies, is not affiliated with the Lightning Process, according to Mel Abbott. While the provider considers The Switch to be distinct, ANZMES maintains its position: we do not recommend any technique that is not evidence-based, and we adhere strictly to the NICE 2021 guidelines.
By sharing this statement, we aim to protect our community’s right to speak openly about their personal journeys, uphold respect across all discussions, and ensure that misinformation is corrected.
ANZMES is NOT endorsing any technique or treatment, but rather, is making it clear that we do not condone bullying, harassment, or threats.
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.”
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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:
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.
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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.
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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.
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.
