ANZMES Charitable Trust

Healthy Futures for New Zealand. Two Lives. Two Futures. One Choice this Election

by

Two Lives. Two Futures. One Choice This Election.

Person A — Aroha and Dr Ngata

Aroha* became unwell after a viral illness. She struggled at first — fatigue, dizziness, crashes after activity — but she was lucky. She found *Dr Ngata, a clinician who recognised post‑exertional malaise, understood orthostatic intolerance, and knew that pacing prevents deterioration.

Together, they built a plan that protected her energy envelope.
Aroha still lives with ME, but she avoided the worst harm.
She stayed connected to her whānau, kept some independence, and accessed community support early.

Aroha represents what’s possible when the system works.

Person B — Wiremu and Dr Jones

Wiremu* also became unwell after a viral illness.
But his GP, *Dr Jones, didn’t recognise the signs.
Wiremu was told to push through, exercise more, try CBT, stay positive.
He followed the advice — because he trusted the system.

Every time he pushed, he crashed.
Every crash made him worse.
Within a year, Wiremu was in a darkened room, unable to stand, unable to tolerate sound or light.
His whānau were exhausted, unsupported, and invisible to the system.

Wiremu represents what happens when the system fails.

Why We’re Asking You to Act

*Dr Hana Ngata, Dr Jones, Aroha, and Wiremu are fictional, representative characters. However, they reflect the real experiences of doctors and patients across Aotearoa and are used to illustrate what early recognition and intervention for ME and Long COVID can — and should — look like in practice and the consequences and harm caused when this does not occur.

Aroha and Wiremu show the truth:
ME and Long COVID outcomes depend on the system — not the person.

This election, we need MPs to commit to a plan that ensures more people become Aroha, not Wiremu. We’re asking our members, whānau, and allies to help ensure the system protects people rather than abandons them. We’re asking you to connect with your local MP about what their party plans to do to ensure the needs of people living with complex long-term conditions are met. We’re asking the government to commit to act now, not one day in the future, because every second counts for people like Aroha and Wiremu.

When the system works

Some people become unwell after a viral illness and receive early recognition. Their clinician understands PEM, orthostatic intolerance, and pacing. They avoid deterioration, stay connected to whānau, and access community support early. They remain independent, safer, and visible to the system.

When the system fails

Others are told to “push through,” exercise more, or stay positive. Every crash makes them worse. Within months, they may be unable to stand, tolerate light or sound, feed or bathe themselves, or access care. Their whānau carry everything alone. They become invisible to the system.

This difference is preventable.

It is the difference between early recognition and preventable deterioration. Between community care and postcode lotteries. Between long‑term planning and falling through the cracks every election cycle.

1 in 30 people in Aotearoa New Zealand are living with a post‑viral long‑term condition.  

That’s one child in every classroom.

One staff member in every medium‑sized business.  

Every community, every whānau, every electorate is affected.

We all know someone facing long‑term illness.

185,000 people are living with Long COVID.  

135,000 of them meet the diagnostic criteria for ME.  

An additional 45,000 New Zealanders were already living with ME before the pandemic.

And every flu season, every COVID wave, every reinfection can generate more.

This is not a political issue.

It is a health issue, an economic issue, a social issue, and a moral issue.

It is about equity, and about meeting basic human rights for people whose lives have been profoundly altered by post‑viral illness.

The Reality is that long-term conditions are Breaking Families and the Economy

We see the same pattern over and over:

  • A previously healthy working adult becomes disabled by ME, Long COVID, or another LTC.
  • The household shifts from two incomes to one.
  • The healthy partner becomes the sole earner, primary carer, household manager, and often the default parent.
  • This load is unsustainable, and many partners eventually experience burnout or illness themselves.
  • When the healthy partner becomes unwell, the family is left with no income at all and no support

This is not rare — it is widespread, predictable, and preventable.

The current system does not recognise this reality. It does not count the right things. It does not intervene early. And it does not support families in ways that reduce long‑term cost to taxpayers.

Why this matters now

The increasing prevalence of post‑viral conditions makes it clear that current gaps can no longer be sustained. Conditions with far lower prevalence already receive dedicated services, research funding, and government commitment. People with ME and Long COVID deserve equitable access to the same level of coordinated care.

Early recognition and intervention reduce diagnostic delays, prevent deterioration, enable people to maintain employment and independence, support people when they need it most, and lower hospitalisation rates. The cost of doing nothing is increased pressure on primary care, reduced labour force participation, lower household income and consumer spending, heightened carer burden shouldering clinical responsibilities they were never trained for, and avoidable hospitalisation — all of which carry significant economic consequences. 

We believe there are three core pillars that when implemented, provide a fair, effective system.

We ask the government to partner with ANZMES to develop these three pillars for long-term conditions.


Pillar 1: Prevention & Early Recognition		Pillar 2: Long‑Term Investment in Community CarePillar 3: A 10‑Year Cross‑Party Plan for Long‑Term Conditions
This pillar focuses on reducing harm through earlier diagnosis, better health literacy, and consistent clinical standards.
It includes:

– Early diagnosis & screening
– Health literacy & prevention
– National LTC coding/tracking
– Workforce training – Diagnostic standards co‑designed with NGOs
– Harm-prevention as the first principle of care		This pillar addresses the need for sustainable, equitable services for people living with long‑term conditions.
It includes:

– Ending postcode lotteries
– Sustainable funding for NGOs who meet need now – NGO integration into referral pathways
– Crisis and respite services
– Specialist workforce development
– Residential care where needed, trained staff		Because health is an investment that must outlast political cycles, this pillar calls for long‑term planning and accountability.
It includes:

– A national LTC data registry
– Research and innovation funding
– Annual Reporting and Accountability
– A CPPG committed to partnering with ANZMES to develop tangible change
– A clear implementation strategy with cross‑party agreement
For ME and LC, this aligns with our long‑standing advocacy for earlier recognition, improved GP education, and consistent use of diagnostic criteria.For ME and LC, this reflects our advocacy for recognition as a disability (or access to equivalent supports), continuity of care, and equitable access to services across regions.For ME and LC, this supports our goals for long‑term research investment, national data collection, and stable policy settings that do not change with each government.

How You Can Help

People with ME and Long COVID deserve a health system that recognises them, protects them, and provides equitable care. Your voice can help make that happen.

Contact your local MP

Send a letter or email, or request a short meeting. Even one message can shift priorities.

Use the template letter and MP questions we’ve provided.

Attend election campaign trail meetings

If you’re able, attend local candidate events and ask one or two of the key questions.

If you can’t attend, consider asking a friend or whānau member to go on your behalf.

Share our social media campaign

Amplifying the message helps reach MPs, journalists, and voters.

You can share posts from ANZMES or download campaign tiles.

Watch the Sick and Tired Aotearoa Chronic Illness Political Panel

This panel provides insight into what MPs have said so far about long‑term conditions.

It’s a powerful way to stay informed and understand where parties currently stand.

Your Voice Matters

This election, we’re asking you to contact your MP and say:

“We need a long‑term plan for long‑term conditions — and ME and Long COVID must be included.”

We’ve provided a set of questions and a template letter to help guide your conversation.

Tell Us How It Went

Please let us know:

  • who you spoke with
  • what they said
  • whether they committed to anything
  • whether they followed up

Your input helps us share information with the community so voters can make informed decisions.

Together, we can ensure Aotearoa elects a government that delivers tangible outcomes for people living with long‑term conditions — and finally provides equitable care for people with ME.

Your Election Toolkit

Five Questions to Ask Your MP

1. Disability Definition vs Access

ME and Long COVID meet the Government’s own definition of disability, yet people with these conditions are excluded from Disability Support Services. What will your party do to resolve this discrepancy and ensure equitable access across all disabilities?

2. Prevention & Early Recognition (Pillar 1)

Early recognition prevents deterioration and reduces hospitalisation. What is your party’s plan to ensure clinicians are trained to recognise PEM, dysautonomia, and orthostatic intolerance so people receive safe, timely care?

3. Community Care & NGO Funding (Pillar 2)

NGOs are essential health infrastructure, yet most are funded to survive rather than meet need. Will your party commit to sustainable funding for NGO‑delivered community care, including crisis care and home support?

4. Long‑Term Planning (Pillar 3)

Will your party support a 10‑year, cross‑party Long‑Term Conditions Strategy — including a national LTC registry — so ME and Long COVID are not left out of planning every election cycle? And will you meet with ANZMES to discuss this opportunity?

5. Cross‑Cutting Equity & Prioritisation

What is your manifesto position on supporting all long‑term conditions — not just the ‘big four’? And how will your party ensure people with invisible or poorly understood conditions are not deprioritised?

Template Letter for Your MP

(Members can copy/paste or print)

Subject: A Request for Action on Long‑Term Conditions in Aotearoa

Kia ora [MP Name],

I am writing as a constituent and as someone affected by ME, Long COVID, or other long‑term conditions. These conditions currently have no consistent coding, no tracking, no care pathways, and no crisis support. People like me — and thousands of others — are falling through the cracks.

I am asking you to support the Three Pillars for Long‑Term Conditions:

  1. Prevention & Early Recognition — training clinicians to recognise PEM, dysautonomia, and post‑viral conditions; ending harmful advice; and embedding harm‑prevention as the first principle of care.
  2. Long‑Term Investment in Community Care — crisis care, home support, respite, regional equity, and sustainable NGO funding.
  3. A 10‑Year Bipartisan Plan — a national LTC registry, annual reporting, and ME and Long COVID included from the start.

I also ask you to address the equity gap where ME and Long COVID meet the Government’s own definition of disability but are excluded from Disability Support Services.

ANZMES the National Advisory body on ME and associated conditions, who represents our sector, is ready to partner with government to develop a cross-party parliamentary group – please meet with them urgently.

Please confirm your commitment to raising these issues within your caucus and supporting a fair, evidence‑based approach to long‑term conditions.

Ngā mihi, 

[Your Name]

 [Your Electorate]

Press Release: ANZMES Name Change & Transition to Charitable Trust

by

FOR IMMEDIATE RELEASE
17 August 2026

ANZMES Announces Transition to Charitable Trust and Unveils Refreshed Brand

ANZMES, Aotearoa New Zealand’s national advisory body for Myalgic Encephalomyelitis (ME) and associated conditions, is pleased to announce its formal transition from an Incorporated Society to a Charitable Trust, effective 17 August 2026. The organisation will now operate under its new legal name:

ANZMES Charitable Trust

This transition strengthens ANZMES’ governance, supports long‑term sustainability, and aligns its structure with the scope of its national role in providing evidence‑based guidance, sector leadership, and education for clinicians, policymakers, and community organisations.

Historically, ANZMES stood for Associated New Zealand Myalgic Encephalomyelitis Society Incorporated.
It now stands for Aotearoa New Zealand Myalgic Encephalomyelitis Service, while continuing to use the widely recognised acronym ANZMES.

The media has often referred to us as the “Associated NZ ME Society.”

Going forward, we may be referred to as:

  • Aotearoa NZ ME Advisory Trust, or

ME Advisory Trust, NZ

  • in addition to ANZMES Charitable Trust.

As part of this transition, ANZMES is also introducing a refreshed brand and updated logo, reflecting its strengthened mandate and commitment to improving outcomes for people with ME and associated conditions across Aotearoa.

The ANZMES logo expresses our identity as Aotearoa New Zealand’s national advisory body for ME and associated conditions. Its three interwoven koru forms represent our core pillars — Research, Representation, and Education — each distinct yet inseparable, reflecting the interconnected nature of our work.

The koru shapes draw inspiration from taniwha — guardians known for strength, vigilance, and protection. This symbolism reflects our role as kaitiaki of the ME community voice: steadfast, principled, and committed to ensuring dignity, accuracy, and integrity in all spaces where decisions are made. They also speak to the complexity of ME and the need to assemble many puzzle pieces of understanding, continuing this story in a culturally grounded Aotearoa form.

The colour placement carries additional meaning.

  • Gold at the top evokes the rising sun — a symbol of clarity, knowledge, and hope.
  • Green to the left represents whenua, grounding, and growth.
  • Blue to the right reflects sky and sea — openness, depth, and global connection.

Together, these elements form a contemporary, distinctly Aotearoa design that communicates guardianship, growth, and forward movement. The logo stands as a visual promise: ANZMES will continue to protect, inform, and uplift the ME community with strength, care, and evidence‑based leadership.

What stays the same

All contact details — including website, email addresses, and postal address — remain unchanged. The volunteers and staff who support the organisation’s work also remain the same, ensuring continuity of service during and after the transition.

About ANZMES Charitable Trust
ANZMES Charitable Trust continues its role as the national advisory body for ME and associated conditions, providing trusted information, representation, and sector coordination. The new structure enhances the organisation’s ability to collaborate with health providers, researchers, government agencies, and community partners.

Press Release: Severe ME Day 2026

by

Tens of Thousands of New Zealanders Now Missing From Society: ANZMES Calls for Urgent Action on Severe ME

Aotearoa New Zealand — 8 August 2026

ANZMES, the National Advisory body for Myalgic Encephalomyelitis (ME), also known as chronic fatigue syndrome, is marking Severe ME Awareness Day with an urgent call for improved early recognition, safer clinical management, and greater visibility for the tens of thousands of New Zealanders living with severe or very severe ME.

International research shows 1 in 30 people now experience symptoms consistent with ME — an estimated 180,000–185,000 New Zealanders. Up to 25% become housebound or bedbound, unable to attend clinic appointments, work, study, or participate in whānau life. These patients are largely invisible to the health system.

Preventing Harm and Preventing Deterioration

ANZMES warns that many people deteriorate into severe ME not because the illness is “mild,” but because early warning signs are missed or harmful advice to “push through” triggers irreversible decline. Protecting patients from post‑exertional malaise and recognising autonomic dysfunction, sensory hypersensitivity, and loss of ADLs early can prevent severe disability.

New Clinical Tools for GPs

To support safer care, ANZMES has released two practical resources:

  • Red Flags Clinical Guide — helping clinicians recognise ME/CFS early and avoid harmful activity‑based approaches (World ME Day 2026).
  • Severe ME in 60 Seconds — a rapid‑assessment tool outlining key signs of severe ME for primary care.

Representative Characters Illustrate Real Experiences Across Aotearoa

ANZMES is using three fictional, representative characters — Dr Hana Ngata, Aroha, and Wiremu — to illustrate real experiences of clinicians and patients across the motu. Their stories show:

  • what safe, early recognition can look like
  • how multidisciplinary care supports patients
  • how missed diagnosis and harmful advice can lead to severe ME
  • the reality of the invisible 25% who cannot leave their homes

These characters are teaching tools designed to help clinicians understand the consequences of delayed or unsafe care.

CME‑Accredited Training for Clinics Nationwide

To address the urgent need for clinician education, ANZMES offers the Know M.E. Clinical Education Programme (CEP) — a CME/CPD‑accredited training series designed for GPs, NPs, nurses, HIPs, practice managers, and allied health professionals.

Clinics can request tailored sessions, including virtual workshops and MDT‑focused modules.

Request Training for your Clinic or MDT

Instant CME: Micro‑Learning Series

Clinicians wanting immediate access can subscribe to the Know M.E. Micro‑Learning Series, receiving eight short modules with expert interviews, case studies, and quizzes.

Subscribe to the Micro‑Learning Series

A Call to Action for Aotearoa

ANZMES urges PHOs, Te Whatu Ora regions, medical educators, and clinicians to:

  • recognise ME/CFS early
  • use the Red Flags Guide
  • protect patients from harmful activity‑based rehabilitation
  • support those who are housebound or bedbound
  • ensure equitable access to NASC and home‑based support
  • undertake CME‑accredited training
  • help make the invisible 25% visible

About ANZMES

ANZMES is the national advisory body on Myalgic Encephalomyelitis (ME) and associated conditions in Aotearoa New Zealand, providing evidence‑based resources, clinical education, research, representation/advocacy, and support for people living with ME and associated conditions.

ENDS

Train Five. Keep Five. Neurological Alliance Election Campaign 2026

by

Supporting the Neurological Alliance of New Zealand

Overview

The Neurological Alliance of New Zealand has launched a nationwide election campaign calling for urgent action on the country’s neurologist shortage. As a proud member of the Alliance, ANZMES is supporting this campaign to ensure every New Zealander living with a neurological condition can access timely, specialist care.

The campaign centres on one clear, practical ask: Train five. Keep five. New Zealand trains up to five neurologists each year, yet only funds around three public hospital roles. This mismatch means we lose specialists to private practice or overseas, even as demand for neurological care continues to rise.

Why this matters

Neurological conditions affect one in three New Zealanders — either through their own diagnosis or that of someone they love. Yet access to specialist care is already under severe pressure.

Key facts from the Alliance’s workforce analysis include:

  • New Zealand has one adult neurologist for every 74,604 people, compared with one for every 41,000 in Australia and one for every 14,000 across other high‑income countries.
  • In 2024, New Zealand had 83 neurologists, providing 67.3 FTEs, when around 98 were already needed.
  • Demand is projected to grow to 122 neurologists by 2036.
  • 80% of people with neurological conditions do not receive the regular specialist review they need.
  • 22% of emergency department presentations are neurological.

These pressures are not abstract — they affect real people, whānau and communities. Delayed diagnosis, avoidable deterioration, increased disability, and higher long‑term costs are the predictable consequences of an under‑resourced workforce.

The Campaign Asks

The Neurological Alliance is calling on all political parties to commit to two straightforward actions:

1. Fund two additional public hospital neurology positions each year

This lifts the publicly funded intake from three to five — matching the number of neurologists New Zealand already trains. It ensures we keep the specialists we invest in, instead of losing them due to a lack of funded roles.

2. Develop a national neurological workforce strategy

New Zealand needs a planned approach to training, recruitment, retention, regional access, follow‑up care, and the needs of people living with chronic neurological conditions.

These commitments are practical, achievable, and urgently needed.

System Impacts of the Shortage

The workforce gap is already affecting care across the country:

  • Clinically appropriate referrals are declined because there are too few neurologists and funded hours.
  • People needing ongoing specialist review may be discharged back to general practice after a single appointment.
  • Follow‑up capacity is far below what chronic neurological disease requires — Health NZ reports a 1:1 ratio of first specialist assessments to follow‑ups, when around six follow‑ups per first assessment would be expected.
  • Emergency departments and GPs carry increasing pressure as people seek care that should be provided by specialists.

Earlier access to neurologists improves diagnosis, treatment, and long‑term outcomes. The current system cannot deliver this without additional workforce investment.

How ANZMES is Supporting the Campaign

As a member of the Neurological Alliance, ANZMES is:

  • sharing the campaign’s key messages with our community
  • Providing the approved campaign letters for supporters to send to MPs and candidates
  • Publishing social media content aligned with the Alliance’s messaging
  • Engaging with political leaders to advocate for the Train Five. Keep Five commitments
  • Encouraging our members, supporters, and wider networks to take action

This page serves as a central hub for our community to understand the campaign, access resources, and participate.

How You Can Help

Your voice matters. You can support the campaign by:

  • Sending the supporter letter to your local MP or candidates: Word Template
  • Sharing campaign posts from our Facebook and LinkedIn page on your social media
  • Talking with friends, whānau and colleagues about the importance of neurological care
  • Encouraging others to learn about the campaign and take action

A Collective Effort

The Train Five. Keep Five campaign is a united call from more than 20 neurological organisations across Aotearoa. Together, we represent the 1.5 million New Zealanders living with neurological conditions — and together, we are asking political leaders to act.

This election year, we invite all members and supporters to stand with us. A stronger neurological workforce means better care, fewer hospital admissions, reduced disability, and lives saved.

Check out the social media campaign on ANZMES Facebook and LinkedIn pages.

If you would like to learn more about the research these neurological statistics are based on, scan the QR code below.

PRESS RELEASE – National Collective of ME/CFS Organisations Calls for Necessary Inclusion of ME/CFS and Long COVID in New Zealand’s Mental Health and Wellbeing Strategy

by

FOR IMMEDIATE RELEASE – 15 May 2026

The Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES)  is calling on the Ministry of Health to address a critical gap in the draft Mental Health and Wellbeing Strategy. ANZMES made this submission on behalf of a national collective of ME/CFS organisations which included Complex Chronic Illness Support, Long Covid Support Aotearoa, M.E. Awareness NZ, ME/CFS Canterbury, MEISS Otago and Southland, ME Support NZ, ME Respite, and Tū Pakari (Stand Together). 

In a comprehensive submission, ANZMES revealed that between 150,000 and 200,000 New Zealanders – a population larger than the city of Hamilton – are now living with ME/CFS or post-viral conditions. Despite this scale, the current draft Strategy fails to mention these conditions, leaving one of the country’s largest chronic illness groups without a safe clinical pathway for mental wellbeing.

ANZMES President Fiona Charlton warns that the mental distress, such as anxiety and/or depression, experienced by this community is often a direct result of systemic failure, rather than primary psychiatric illness in origin.

“Mental distress in our community is a rational response to unmanaged physical symptoms, loss of employment, and the trauma of being disbelieved by the very systems designed to help” says Fiona Charlton. “When patients are met with ‘medical gaslighting’ or prescribed harmful treatments,  the resulting trauma is healthcare-induced.”

Key Findings Highlighted in the Submission:

  • A Growing Population: Ministry of Health data suggests 185,000 people currently live with Long COVID.  ANZMES estimates 30-35% of these individuals will meet the diagnostic criteria for ME/CFS.
  • Harmful Interventions: Many New Zealanders are still being prescribed outdated treatments that worsen their condition, contrary to international guidelines (NICE 2021; CDC 2021).
  • Access Barriers: For the 25% of patients who are housebound or bedbound, the mental health system is effectively non-existent. Current models require “active participation” that physically exceeds the energy limits of those with Post-Exertional Malaise (PEM).
  • Inequity for Māori: Māori face higher disability burdens and greater barriers to diagnosis, leading to significant diagnostic overshadowing and lack of culturally grounded care.

ANZMES is calling on the Ministry of Health to establish a technical advisory group to co-design implementation modules for the 10-year Strategy. Key recommendations include:

  1. Mandating safe-care guidelines that prohibit harmful interventions like GET.
  2. Developing workforce training on PEM and sensory-sensitive care using existing ANZMES-accredited clinical education.
  3. Ensuring physical accessibility through telehealth, bedside care and low sensory clinical environments for the severely affected.
  4. Recognising healthcare-induced trauma within the Strategy’s trauma-informed care framework.

“To achieve the Strategy’s goals of ‘Access and Choice,’ the Ministry must acknowledge that for a bedbound patient, ‘community care’ must mean bedside care,” says Fiona Charlton. “We cannot allow 200,000 New Zealanders to remain invisible in a strategy meant to ensure the wellbeing of all.”

PRESS RELEASE – World ME Day, ANZMES launches new clinical “Key Red Flags” guide to help GPs recognise ME/CFS earlier and prevent avoidable harm

by

The Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) is marking World ME Day 2026 with a national call to action: Take ME Seriously. This year’s campaign focuses on improving early recognition of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in primary care through a new, evidence‑based Key Red Flags for GPs resource.

Thousands of New Zealanders live with ME/CFS — a serious, multisystem neuroimmune disease that profoundly affects mobility, cognition, autonomic function, and quality of life. Yet many remain undiagnosed or misdiagnosed for years, leading to preventable deterioration.

ANZMES President Fiona Charlton says the new clinical tool is designed to meet GPs where they are: “Most people with ME/CFS present first — and often only — in primary care. Early recognition is the difference between stabilisation and long‑term disability. Our Key Red Flags guide gives GPs the practical, real‑world indicators they need to identify ME/CFS early, recognise deterioration, and prevent iatrogenic harm.”

A practical, GP‑friendly tool for early detection

The Key Red Flags for GPs document distils the latest international evidence into a concise, one‑page clinical guide. It highlights the most important “dashboard lights” that signal ME/CFS in mild to moderate presentations — the group most commonly seen in general practice.

The resource focuses on:

  • Post‑Exertional Malaise (PEM) — the cardinal symptom of ME/CFS and the strongest diagnostic indicator.
  • Boom–bust cycling and shrinking functional capacity.
  • Orthostatic intolerance (OI) and POTS‑like symptoms, often mistaken for anxiety.
  • Talk Test failure — a simple in‑consult indicator of exertional intolerance.
  • Cognitive overload and sensory hypersensitivity, frequently subtle but clinically significant.
  • Early functional decline, which is preventable with timely pacing and stabilisation.

The guide also outlines immediate GP actions, including pacing education, orthostatic vitals, low‑stimulus consultations, and avoiding harmful recommendations such as graded exercise or “pushing through.”

A national call for safer, evidence‑based care

ANZMES’ 2026 campaign builds on its ongoing advocacy for improved recognition, updated clinical pathways, and alignment with global best practice. Previous ANZMES statements have highlighted the consequences of outdated treatment protocols, under‑recognition, and lack of specialist services in New Zealand.

“New Zealanders with ME/CFS deserve care that reflects the science,” Charlton says. “This resource is a step toward ensuring every GP in Aotearoa can recognise ME/CFS early, respond safely, and prevent avoidable decline.”

About World ME Day

World ME Day is a global initiative held annually on 12 May to raise awareness of ME/CFS and promote evidence‑based understanding of the disease. This year’s theme, Take ME Seriously, calls on clinicians, policymakers, and the public to recognise ME/CFS as the serious biomedical condition it is.

Access the Key Red Flags resource

The Key Red Flags for GPs document and full World ME Day 2026 campaign materials are available at:
anzmes.org.nz/world-me-day/take-me-seriously-2026

GPs at Frontline for Early Recognition

by

DecodeME Study explained

Every day in clinics across Aotearoa, general practitioners are the first — and often only — clinicians to see the early signs of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). With recent Ministry of Health/Manatū Hauora and Open Medicine Foundation estimates suggesting that up to 185,000 New Zealanders may now be living with ME/CFS or Long COVID with ME‑like features, the scale of need is rapidly increasing. Most will present first to primary care. That places GPs in a uniquely powerful position: early recognition and early intervention can change the trajectory of this disease.

Why World ME Day Matters for Primary Care

World ME Day (12 May) highlights the importance of early recognition and harm‑prevention in general practice. ME/CFS is not rare, benign, or self‑limiting. It is a serious, multisystem neuroimmune disease that can lead to profound disability. Yet many patients remain undiagnosed for years — not because symptoms are invisible, but because they are misunderstood.

GPs can change that. Early recognition prevents harm, reduces deterioration, and helps patients stabilise before they fall into severe disease.

The DecodeME Study: What GPs Need to Know

DecodeME is the largest genetic study of ME/CFS ever conducted, analysing the DNA of 15,579 people with ME/CFS and 259,909 controls. DecodeME looked at genetic variants in DNA sequence — the fixed letters of the genome. These do not change because someone becomes ill. Chronic illness can change gene expression, but it cannot change gene sequence. The findings provide clear biological evidence of a multisystem disease involving immune signalling, neuroinflammation, mitochondrial function, and antiviral defence.

What DecodeME Found — in Plain Language

Researchers identified eight genomic regions where people with ME/CFS differ from those without the illness. These regions include genes involved in:

  • Immune system regulation (SLC15A4, PRKCA, CD86, IL7R, HLA‑DQB1)
  • Mitochondrial (cell powerhouse) dynamics and cellular energy regulation (AKAP1, ATP9A)
  • Neuronal excitability and sensory processing (KCNB1)

In simple terms, these genes influence how the immune system switches on and off, how cells produce and manage energy, and how the nervous system processes signals.

DecodeME’s findings align with decades of biomedical research showing:

  • Immune dysregulation
  • Neuroinflammation
  • Autonomic dysfunction
  • Mitochondrial impairment
  • Abnormal sensory processing

These results directly contradict outdated, flawed theories suggesting ME/CFS is caused by psychological factors, deconditioning, or maladaptive beliefs. The genetic signals identified in DecodeME are differences in DNA sequence — fixed from birth and not altered or caused by chronic illness, lifestyle, stress, or personality. This means the study isnot ‘capturing a symptom’; it is identifying biological predispositions (the underlying in-build tendencies in the body) that you are born with. These differences help explain why some people develop ME/CFS after a trigger such as a viral infection or other environmental stressor — their immune and neurological systems respond differently when challenged.

DecodeME reinforces what patients and clinicians have long observed: ME/CFS is a real, physical, biological disease.

The Cardinal Feature: Post‑Exertional Malaise

The most important diagnostic anchor remains Post‑Exertional Malaise (PEM) — the delayed, disproportionate worsening of symptoms after physical, cognitive, emotional, or orthostatic exertion.

If a patient does not have PEM, they do not have ME/CFS.

PEM is not “tiredness after activity”; it is a pathological crash that can last days or weeks. Patients often describe it as:

  • “I can do things, but I pay for it later.”
  • “I can’t bounce back.”
  • “My body shuts down after I do things.”

Recognising PEM early allows GPs to guide patients toward safe activity management and avoid interventions that risk deterioration.

🚩Red Flags for GPs — When ME/CFS Should Be on Your Radar

GPs often see the earliest clues:

  • A viral or infectious trigger followed by persistent decline
  • Marked symptom worsening after even mild exertion
  • Crashes occurring 12–48 hours after activity
  • Cognitive overload or sensory intolerance
  • Orthostatic symptoms such as dizziness or tachycardia
  • Boom‑and‑bust cycling
  • Failure to recover to baseline after exertion

These are the patients who need careful pacing guidance, harm‑prevention strategies, and monitoring for deterioration.

Why Early Intervention Matters

Early recognition allows GPs to:

  • Prevent PEM episodes through pacing and activity stabilisation
  • Avoid harmful graded exercise or “return to normal” plans
  • Identify and manage orthostatic intolerance
  • Document functional decline early for workplace/school support
  • Prevent severity progression (mild ⇢ moderate ⇢ severe ⇢ very severe)
  • Validate a very real and debilitating disease

The GP’s response in the first months of illness often determines whether a patient stabilises or deteriorates.

Where GPs Can Access the Full Clinical Toolkit

Visit the ANZMES World ME Day page for diagnostic criteria, PEM recognition tools, management principles, pacing guidance, and access to the World ME Alliance medical education hub.

The World ME Day Red Flags Guide focuses on early recognition and harm‑prevention.

The Know M.E. Clinical Education Programme (CME/CPD accredited) provides practical in‑clinic tools, early stabilisation strategies, and multimorbidity identification. GPs can begin immediately through the Micro‑Learning Series, delivered straight to their inbox.

Closing Message

With increasing prevalence ME/CFS is a major public health issue — and one that sits squarely in the domain of primary care. This World ME Day, ANZMES invites GPs to explore the red flags, deepen clinical understanding, and join the movement to #TakeMESeriously.

Access the GP Red Flags Guide and full clinical resources at:
https://anzmes.org.nz/world-me-day/take-me-seriously-2026/

Press Release – ANZMES Launches National “Take ME Seriously” Campaign to Transform ME/CFS Clinical Care in Aotearoa

by

Release Date: 5th May 2026

The Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) is officially marking World ME Day on 12 May 2026 with a national call to action under the global theme “Take ME Seriously”. This year’s campaign is focused on bridging the significant gap between scientific discovery and clinical practice by providing New Zealand’s healthcare professionals with the evidence-based tools they need to recognise and manage Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) safely. With the recent release of breakthrough findings from the world’s largest DNA study, DecodeME, the biomedical reality of this condition is undeniable, yet many New Zealanders continue to face outdated treatment narratives that can lead to permanent clinical harm.

Leading up to World ME Day, ANZMES will launch new clinical resources and have conversations designed to help General Practitioners identify early warning signs such as Post-Exertional Malaise (PEM) and orthostatic intolerance. These resources are part of a wider push to promote the World ME Alliance’s Medical Education Hub, a global library of peer-reviewed materials that align local primary care with international best practices. ANZMES President Fiona Charlton emphasises that for too long, ME/CFS has been misidentified as a psychological or deconditioning issue, whereas the current science confirms it as a multisystem hardware failure involving immune dysregulation and mitochondrial dysfunction.

The campaign also highlights the “Know M.E. Clinical Education Programme,” a CME/CPD-accredited training series for hospital teams, nurses, and allied health professionals across Aotearoa. By providing these accredited modules, ANZMES is helping clinicians understand the “Energy Envelope” and the fundamental necessity of pacing as a primary management strategy. Distinguished experts, including Dr. Ros Vallings and Professor Warren Tate, have contributed to this educational push, underscoring that when clinicians are trained to understand the biological markers of the disease, the healthcare system moves from a state of uncertainty to preventing avoidable functional decline.

For the thousands of New Zealanders still waiting for a legitimate diagnosis, the 2026 campaign offers a message of hope and a formalised pathway to support. ANZMES is encouraging the public and the medical community to share these “decoded” facts to spread the science and challenge long-standing misconceptions that have historically hindered patient care. 

We ask that you please support and follow our 2026 campaign on ANZMES Facebook. over the next week. Sharing our content helps spread our message further and reach our health practitioners across Aotearoa. 

Detailed clinical resources, diagnostic criteria, and localised referral pathways are now available on the ANZMES website to ensure that every healthcare provider in Aotearoa is equipped to take ME seriously: World ME Day 2026 – ANZMES 

Press Release – ANZMES Launches M.E. Time — A Fresh, Evidence‑Informed Quarterly Magazine for the ME/CFS Community

by

March 2026 – ANZMES is proud to announce the launch of M.E. Time, our newly refreshed quarterly magazine designed to inform, empower, and connect people living with ME/CFS, Long COVID, and associated conditions across Aotearoa New Zealand.

Created fully in‑house for the first time, M.E. Time brings together evidence‑based research, lived experience, expert commentary, sector updates, and practical resources — all in a beautifully curated, easy‑to-read format. As President Fiona Charlton writes in her opening message:

“To gain control over the look, feel, and content, we are now producing the magazine in-house… Your feedback played a large part in the revitalisation of the magazine and we hope you will love it as much as we do!”

This refreshed publication replaces Meeting Place and marks a new chapter in how ANZMES communicates with and advocates for our community.

A Magazine for Everyone — Now Available to Non‑Members

For the first time, M.E. Time is available not only to ANZMES members but also to the wider public.

Members continue to receive the magazine free of charge, while non‑members can now purchase individual issues through our online shop.

This ensures the publication meets ISSN requirements for public availability — and allows anyone interested in ME/CFS, Long COVID, or post‑viral illness to access high‑quality, evidence‑informed content.

What’s Inside Issue 1

The inaugural issue is rich with content spanning research, advocacy, lived experience, and practical support. Highlights include:

✔ Expert Voices

Featuring insights from Dr Ros Vallings and Professor Warren Tate, who discuss the biological basis of ME/CFS and the overlap with Long COVID:

“There are clear signs of immune dysfunction, inflammation, and metabolic disturbances…”

✔ Lived Experience

Deeply personal stories from people navigating ME/CFS and Long COVID — including reflections on pacing, disability, and resilience.

✔ Research Digest

Easy‑read summaries of cutting‑edge biomedical research, including genetics, immune dysfunction, mitochondrial science, and post‑viral mechanisms.

✔ Advocacy Updates

A roundup of ANZMES’ recent submissions and policy work, including protecting carers, safeguarding youth on Job Seeker Support, and ensuring ME/CFS expertise is embedded in Long COVID care pathways.

✔ Community News & Spotlight

Sector collaborations, media coverage, and a feature on ME Respite’s practical support services.

✔ Resources & Events

Patient guides, carer resources, support group listings, and details for the 2026 Writing & Poetry Competition.

Why This Matters

M.E. Time is more than a magazine — it’s a platform for connection, education, and empowerment. It reflects ANZMES’ commitment to:

  • Evidence‑based information
  • Community voice
  • Sector leadership
  • Accessible, compassionate communication

Get Your Copy

  • Members: Your free digital copy is available now.
  • Non‑members: Purchase Issue 1 for $5.00 via the ANZMES online shop.

Whether you’re living with ME/CFS or Long COVID, supporting someone who is, or working in healthcare, M.E. Time offers a thoughtful, evidence‑informed companion for your journey.

New ANZMES Long COVID Patient Information Pack Now Available

by

ANZMES is pleased to announce the release of our comprehensive Post‑COVID‑19 Condition (Long COVID) Patient Information Pack, now available digitally through our online shop. This evidence‑based, patient‑centred resource has been created to support people who are newly diagnosed, awaiting diagnosis, or struggling to understand the complex and often confusing landscape of Long COVID.

Drawing on the latest international research and clinical consensus, the pack explains Long COVID as a multi‑system, post‑viral condition with strong overlaps with ME/CFS — including shared biological features, symptom patterns, and the central importance of pacing and rest‑based management. It is designed to demystify the condition and empower patients with clear, practical guidance they can use immediately.

What’s Inside the Pack

🧭 A clear explanation of Long COVID
 Including how it is defined by the WHO and Health NZ, why symptoms persist, and how it relates to ME/CFS and other post‑viral syndromes.

🧬 The science behind the illness
 An accessible overview of current biomedical findings, including immune dysregulation, mitochondrial dysfunction, autonomic instability, and why Long COVID is not simply deconditioning.

🩺 Diagnosis: what to expect
 A step‑by‑step guide to the diagnostic process, symptom clusters, and the importance of ruling out other conditions. Includes practical symptom‑tracking tools and questions to take to appointments.

🌪️ Understanding the “Septad” of common coexisting conditions
 A detailed explanation of the seven frequently overlapping conditions seen in Long COVID and ME/CFS, and why managing them holistically is essential.

⚡ Pacing and energy management
 A full introduction to pacing, baseline setting, and avoiding Post‑Exertional Symptom Exacerbation (PESE/PEM), with guidance on cognitive, emotional, and physical exertion.

🌬️ Breathing and respiratory support
 Practical techniques such as the Bradcliff Breathing Method, “Stop, Drop, Flop,” and rectangle breathing to help manage air hunger and dysfunctional breathing patterns.

🧂 Managing dysautonomia and POTS
 A breakdown of the new global consensus on autonomic disorders, including the three‑tier management approach, questions for your cardiologist, and non‑pharmacological strategies like compression and volume expansion.

🍎 Nutrition, hydration, sleep, and stress management
 Evidence‑informed lifestyle strategies, including low‑histamine options for MCAS, sleep hygiene tips, and approaches to managing sensory sensitivities and stress‑related symptom flares.

🤝 Support networks and further resources
 Links to ANZMES education programmes, clinical resources, and regional support groups across Aotearoa.

How to Access the Pack

The Long COVID Patient Information Pack is available now:

  • $2.50 for ANZMES members (digital)
  • $5.00 for non‑members (digital)
  • Printed copies available for the above prices plus the cost of postage and packaging.

This resource has been created to give patients clarity, validation, and practical tools at a time when many feel overwhelmed or unsupported. It also serves as a valuable reference for whānau, carers, and health professionals seeking to better understand this complex condition.

Additional Resources for Primary Care

For clinicians wanting further guidance, ANZMES also offers a free Primary Care Long COVID Resource released in 2023, available at:
https://anzmes.org.nz/anzmes-release-resources-for-primary-care/

And this month, Victoria University of Wellington has released a concise, practical one‑page Long COVID guide for primary health care, offering another helpful tool for busy practitioners.

Malcare WordPress Security