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All the latest news from ANZMES.

Press Release: ANZMES Name Change & Transition to Charitable Trust

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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 – 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

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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

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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

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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

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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

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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

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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.

Press Release – World ME Alliance Launches Medical Education Hub Featuring Key ANZMES Clinical Resources

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For Immediate release – 28/10/2025

The Associated New Zealand ME Society (ANZMES) is proud to announce that its key clinical resources are featured on the new Medical Education Hub, launched in the last week by the World ME Alliance (WMEA). The WMEA is a global coalition of ME organisations working to improve understanding, diagnosis, and care for people with ME/CFS worldwide.

The hub is a dedicated online resource designed to equip healthcare professionals globally with essential knowledge about ME/CFS. This initial launch is a pilot version, which the WMEA plans to build upon and improve over time, particularly regarding accessibility and language options.

The hub provides a comprehensive library, featuring resources in multiple languages and organised by key categories for healthcare professionals. ANZMES is proud to have its vital resources for Primary Care in ME/CFS and long COVID and Secondary Care for Severe ME/CFS and long COVID featured alongside materials from other internationally renowned sources, including the Bateman Horne Center, CDC, Mayo Clinic, and NICE; setting a clear benchmark for evidence-based guidance.

Collectively, the guidelines and resources on the hub directly address critical gaps in medical education for both primary and secondary care settings. This empowers clinicians worldwide to provide better, more informed care for individuals living with ME/CFS and long COVID.

The Medical Education Hub is now live and accessible to the public and healthcare professionals. The WMEA is actively seeking user feedback to guide future developments.

View the new hub at: worldmealliance.org/medical-education-hub 

Press Release – Grant Scholarship Winners 2025

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For Immediate release – 14/10/2025

ANZMES, Aotearoa’s National Advisory on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), is proud to announce the two recipients of our 2025 Grants & Scholarships Programme. 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. 

ANZMES is delighted to confirm that Dr. Natalia Boven of the COMPASS Research Centre at the University of Auckland has been awarded a $25,000 Grant as part of the 2025 funding round. This Grant will contribute towards the costs of her project, titled “Identifying child and adolescent predictors of adult ME/CFS and Long COVID,” which will use linked administrative data to explore the association between childhood health conditions – particularly those linked to dysfunctional mast cell activation (MCAS) – and the risk of developing ME/CFS and Long COVID in early adulthood. The research team at the University of Auckland includes Dr. Anna Brooks, Keith McLeod, Dr. Nick Bowden (a 2023 ANZMES grant recipient), Dr. Lisa Underwood, Dr. Nicola Gillies, and Dr. David Musson. This crucial study is intended to help reduce diagnostic delays, inform risk mitigation strategies, and contribute to understanding underlying pathophysiology.

Natalia Boven, the 2025 Grant recipient, states: “We are excited to have been awarded a research grant from ANZMES to allow us to pursue our research into ME/CFS and Long COVID.” We hope this research will help identify individuals at greater risk of developing ME/CFS and Long COVID, reduce diagnostic delays, and contribute to understanding of underlying pathophysiology. We are really grateful to ANZMES for funding this research.”

ANZMES is also pleased to announce Galina Mandich of the University of Otago as the recipient of a $10,000 research scholarship. The funding will support a 10-week summer research project, providing a $7,000 internship stipend and $3,000 for research materials and expenses. The study is titled: “Development of a genetic susceptibility test for developing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID: Has the large 2025 Decode ME GWAS study provided a key advance?”.  The study, conducted alongside Emeritus Professor Warren Tate and Katie Peppercorn, will analyse blood samples in families where multiple members are impacted by ME/CFS and Long COVID. The aim is to identify common genetic markers or a ‘signature’ shared between them. This signature could be a significant step towards earlier diagnosis, treatment, and improved outcomes for those impacted by these debilitating conditions. 

Galina Mandich, the 2025 Scholarship recipient, states: “It can eventually provide healthcare practitioners with an important tool to support individuals with earlier intervention and care, alongside ongoing education to raise awareness and understanding. It is a privilege to continue learning about ME/CFS/LC, and I am very grateful to ANZMES for this wonderful opportunity. As a future clinician, it is my hope that this experience will provide invaluable knowledge for me to be able to provide clinical guidance and understanding towards patients with ME/CFS/LC and their families.”

Fiona Charlton, President concludes “We are pleased to offer substantial support for researchers dedicated to advancing our understanding of ME/CFS. This is only made possible by the support of our members so we’d like to give a special Thank You to them.” 

Press release – ANZMES publishes critical guide to help doctors navigate ME/CFS research and avoid harmful treatments

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7th October 2025 – For immediate release

ANZMES, the leading National Advisory on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), has published a new resource for healthcare professionals, “A Guide to Navigating Research: Discerning Robust vs. Flawed Science.” This essential article, released in conjunction with a one-page toolkit, is designed to combat a history of misinformation that has led to inadequate care and often harmful treatments for ME/CFS patients.

“Our goal is to arm doctors with the tools they need to critically evaluate health claims and research,” said Fiona Charlton, President of ANZMES. “By highlighting the difference between evidence-based medicine and flawed science, we can help prevent the cycle of misunderstanding and ensure patients receive care that is grounded in a true understanding of ME/CFS as a complex, biological disease.”

The new guide outlines key principles of quality research, including validity, reliability, and the crucial role of replication. It also provides a checklist for healthcare professionals to scrutinize a study’s source, methodology, and conclusions. The toolkit emphasises the importance of avoiding common research biases, such as confirmation bias and multiple testing bias, and advocates for the use of proper diagnostic criteria for ME/CFS research.

To help doctors quickly assess the quality of a study, ANZMES has identified key “red flags” and “green flags.”

Red flags of flawed science include studies with a conflict of interest (eg. funded by a for-profit entity), a lack of ethical oversight, or poor methodology such as the absence of a control group or a high drop-out rate. Research that relies on vague data, shows confirmation bias, and overstates conclusions not supported by the evidence should be viewed with skepticism.

Green flags of robust science signal a study that is transparent about its funding, has undergone a formal ethical review, and uses rigorous methodology, including the use of precise diagnostic criteria. Good research also integrates objective data, acknowledges its limitations, and is published in a peer-reviewed journal. The most trustworthy research is one whose findings have been replicated by independent research teams.

ANZMES urges healthcare professionals to embrace shared decision-making, where well-informed patients and their lived experiences are central to the treatment plan. This collaborative approach is vital for building trust and ensuring the management plan respects the unique needs of individuals with this historically misunderstood condition.

Access full article and one-page toolkit here:

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