World ME Day

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 – World ME Day: A Call for Transformative Action in ME/CFS Care

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Release Date: 9th May 2025

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:  

  1. Formal Partnership for Excellence: Collaborate with ANZMES to establish a Centre of Excellence, prioritising gold-standard care, research, and education.  
  2. Cross-party Group Formation: Introduce a dedicated parliamentary group to harmonise national policy with global best practices.  
  3. 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:

Transforming ME_CFS Care_ A Call to Action for Aotearoa New ZealandDownload

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:

2025 ME Day Member Lobby LetterDownload

Press release – World ME Day 2025: Busting Myths and Uniting Communities for ME/CFS Awareness  

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Release Date: 5th May 2025

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:  

  1. 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.  
  2. Support Blue Tea Sunday: Host or attend a Blue Tea event to raise funds for your local or national ME/CFS organisation.  
  3. Contact Your Local MP: Advocate for systemic change by sending a lobby letter urging better recognition, funding, and care for ME/CFS.  
  4. Fundraise: Organise community events to support regional and national ME/CFS groups in their advocacy and research efforts. 
  5. 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.
  6. Find out more here: More info: https://anzmes.org.nz/world-me-day/myth-busting-world-me-day-2025/

Why It Matters

  

ME/CFS affects individuals of all ages, genders, and backgrounds, yet systemic gaps in healthcare and persistent stigma leave many without adequate support. Regional groups are working tirelessly to address these challenges, but they need your help to amplify their efforts.  

By taking action this World ME Day, you can help ensure that ME/CFS is recognized as a serious biological illness and that those affected receive the care and dignity they deserve. Learn more at: anzmes.org.nz/world-me-day/myth-busting-world-me-day-2025/

Join Us  

Let’s unite to challenge the myths, champion the facts, and drive change. For more information, resources, and ways to get involved, contact your local ME/CFS group. Together, we can make a difference.

ANZMES – National Advisory on ME

Complex Chronic Illness Support

M.E. Awareness NZ

ME Respite

ME Support NZ

MECFS Canterbury and West Coast

MEISS Otago and Southland

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World ME Day 2024 – Press release

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Date: 24.04.2024

World ME Day Sheds Light on Global Health Crisis: Millions Affected by COVID triggered cases

The National Advisory on ME (ANZMES) is calling on Kiwis to come together for World ME Day as we battle a global health crisis.

Already worldwide there are an estimated 25 million people with Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS).

There has been a significant increase in cases of ME with a shift to COVID-19 being the main trigger for this disabling illness.

There are estimated to be 65 million cases of long COVID worldwide and 50% meet the criteria for an ME diagnosis.

This World ME Day, May 12, 2024, marks the 55th anniversary since the World Health Organization (WHO) officially acknowledged ME in their International Classification of Diseases. Despite this, there is still no universal cure or treatment.

To highlight this global health crisis and demand that action is taken now, ANZMES proudly stands alongside World ME Alliance members across the globe calling Kiwis to get involved and become a #GlobalVoiceForME to amplify our efforts to be heard.

ANZMES is the National Advisory on ME and is a founding member of the World ME Alliance, supporting the ME community since 1980.

ANZMES president, Fiona Charlton, says the government needs to recognise that the pandemic is clearly not over and more action is needed to protect and support people.
“The convergence of ME and COVID-19 has created a perfect storm, amplifying the challenges faced by patients and healthcare providers.

“Health protections have been removed but cases keep rising and people are suffering,” she says.

ME is a debilitating chronic illness that is often misunderstood, characterised by post-exertional malaise (an exacerbation of symptoms after minimal exertion), and a range of other symptoms that significantly impact daily functioning, such as pain, cognitive impairment, and orthostatic intolerance (blood pressure and volume dysregulation).

In 1969, the World Health Organisation classified ME as a neurological disease and included ME and CFS in 2019 under post viral syndrome. An estimated 80% of people with ME/CFS develop it after a virus.

Given the similarities in symptoms both ME and long COVID benefit from a similar approach to support and management.

Associate Professor Mona Jeffreys at Te Herenga Waka / Victoria University of Wellington says “The COVID-19 pandemic has resulted in large numbers of patients with long COVID, many of whom meet diagnostic criteria for ME. “ME is a debilitating condition, which cannot be treated, but with compassion and evidence-based care, the symptoms and their impact can be lessened.

“I call on all health professionals treating someone with ME to understand that this is a neurological, not psychological, illness. “Encouraging your patient to exercise is likely to worsen their fatigue and post-exertional malaise. “Suggesting treatments such as graded exercise therapy and cognitive behavioural therapy is outdated and is not evidence-based. “Investigating symptoms of POTS, that can respond to treatment, is important.

“The best thing you can do is to familiarise yourself with the Best Practice Guidelines, and treat patients accordingly.” The National Advisory on ME released easy to follow best practice in December 2023.

The hard facts

The latest Health New Zealand data shows 3,873 COVID-19 cases were reported in the last week and 21 deaths were attributed to the virus (as at 23/04/2024)[2]. 78% more sick leave was taken in 2022 (than 2020) and wait times for emergency patients were exceeded by 95% of DHBs, in 2022.

Of 65 million long COVID cases, half may develop ME.[3] Added to the existing estimated numbers globally, that’s 57.5 million people worldwide significantly ill with ME/CFS. In Aotearoa this equates to 416,350 people with this debilitating condition, up from an estimated 25,000.

Global research shows reinfection continues to pose a significant threat of post-viral complications with implications for long-term socioeconomic burden.[4],[5]

“Without appropriate management, the window for recovery gets smaller and smaller, and that is why international best practice must be implemented” says Charlton.

Research also highlights a disparity between government funding and level of disease burden for ME, in comparison to other chronic illnesses.[6]

Emeritus Professor Warren Tate, of the University of Otago says, “the major clinical subgroup of Long COVID, the post viral syndrome arising from the global pandemic, has brought a greater awareness of the needs of the many ME/CFS patients suffering from a very similar ongoing debilitating fatigue illness.”

“Long COVID provides the opportunity for there finally to be a focus on education, and standardised best practice management and social support for the significant numbers of patients of both groups.

“Managing the burden on families and their communities, and understanding how ME/CFS and Long COVID affect our health and economic systems looms as an urgent priority not only for New Zealand but for all countries.” says Tate.

World ME Day serves as a catalyst for action urging the government and public health authorities to allocate more resources to develop strategies for early identification, diagnosis, and management of post-viral illness, including appropriate support for individuals with ME.

Each national organisation around the globe has the opportunity to foster change by building relationships with local and national governments, encouraging them to develop appropriate policies and programmes to deliver vital services for care and intervention. Each Government has the power to advocate for recognition of this global health crisis, and ensure that the World Health Organisation implements action to tackle this serious and significant problem.

“There are many very sick people battling for support and being ignored. There is no cure or universal treatment for ME and no dedicated funding or efforts from the government to try to fix this. As the National Advisory on ME, we have delivered best practice guidance to the government and all medical bodies in Aotearoa/NZ and believe it must be adopted to deliver the standard of care required.

We need world health leaders to step up and take action but we also need the support of everyday individuals in the community,” says Charlton.

“When we unite as a Global Voice for ME we are showing health and government officials that they must listen, they must address needs, and they must bring vital change now.” Charlton says.

Each year the ME/CFS organisations throughout New Zealand join together as a collective to participate in World ME Day and share the same message. This year the collective joins the global voice for ME and encourages everyone to get involved in the following ways –

How to take action for World ME Day 2024:

  • Send – a letter to your local MP or the Health Minister, Dr. Shane Reti asking for them to take action on behalf of the ME and long COVID community.
  • Share – be a #GlobalVoiceForME, share your ME story on social media, share your lived experience or make a poster to educate others about ME. Use the hashtags #GlobalVoiceForME #GlobalHealthCrisis #NZCollectiveVoiceForME.
  • Participate – send ANZMES your photo holding a piece of paper that says how many years you’ve been unwell with ME, to be used in a video on social media.
  • Learn – learn about ME and long COVID so you can offer support to friends and family living with the condition – visit anzmes.co.nz and worldmealliance.org
  • Fundraise – host a ‘Blue Sunday’ Tea Party for ME to raise funds see https://the-slow-lane.com/blue-sunday/ for more information.
  • Light it up – Councils and business owners can light their place up in blue in solidarity for ME.

Join us in acknowledging World ME Day and taking meaningful steps toward a future where individuals with ME receive the recognition, care, and support they deserve.

Aotearoa/NZ ME/CFS Collective includes:

ANZMES – National Advisory on ME

Complex Chronic Illness Support

M.E. Awareness NZ

MECFS Canterbury

MEISS Otago and Southland

ME Support NZ

Rest Assured Charitable Trust

Who are ANZMES?

We are the National Advisory on ME in Aotearoa/New Zealand. With four decades of knowledge and experience, we are the trusted leaders in ME education, representation, and research. Our expertise comes from a reputable medical team of advisors, including 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 executive committee comprises experts in their respective fields for governance, policy, leadership, representation, and education.

Always a trail-blazer, it was the first ME charity of its kind in the world, established in 1980, as ANZMES, to provide support, information dissemination, and representation, achieving past outcomes through dedication, passion, time, and knowledge of lived experience. Today, the organisation leads as a Royal New Zealand College of General Practitioners (RNZCGP) Continuing Medical Education (CME) Registered Provider, proud funder of vital research, and steward of the community voice.

We continue to disseminate evidence-based information nationally, and represent the ME voice globally as a founding member of the World ME Alliance through advocacy and leadership. ANZMES latest education programme – Know M.E. – is a video podcast and news series featuring up-to-date, evidence based research and information on ME and Post COVID Conditions.

Contacts:

ANZMES – National Advisory on ME

Contact info – Angela Cayford – info@anzmes.org.nz

Complex Chronic Illness Support

Contact info – Miranda Whitwell – info@ccisupport.org.nz

M.E. Awareness NZ

Contact info – Rose Camp –  m.e.awareness.nz@gmail.com

MECFS Canterbury

Contact info – Nicola Stokes – info@mecfscanterbury.nz

MEISS Otago and Southland

Contact info – Heather and Kerry – meiss.support@gmail.com

ME Support NZ

Contact info – Vanessa Atkinson – info@mesupport.org.nz

Rest Assured Charitable Trust

Contact info – Phil Morton –  info@restassured.org.nz

ANZMES: A #GlobalVoiceForME on World ME Day 2024

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As we approach World ME Day on May 12th, 2024, ANZMES joins the global community in shedding light on the pressing issues surrounding Myalgic Encephalomyelitis (ME). This significant day coincides with the 55th anniversary since the World Health Organization (WHO) officially acknowledged ME in their International Classification of Diseases, underscoring the critical need to address this global health crisis.

In recent times, the landscape of ME has undergone a transformation, with COVID-19 emerging as the most common trigger for this chronic illness. The intersection of these two health challenges has resulted in a significant increase in the number of people affected by ME. Today, we estimate that at least 55 million individuals worldwide are living with the debilitating effects of this condition. Amidst these escalating numbers, ANZMES proudly stands alongside World ME Alliance members across the globe, collectively amplifying support for initiatives that seek to address the multifaceted impact of ME on individuals and communities alike.

No Cure, No Universal Treatment

One of the harsh realities we face is that there is currently no cure for ME, nor universally effective treatments. Individuals grappling with ME often endure not only the physical toll of the illness but also the stigmas that accompany it. It is imperative that we, as a global community, come together to address these gaps in understanding, research and treatment.

Building a #GlobalVoiceForME 

This World ME Day, ANZMES will be joining the call upon individuals, organizations, and countries to become a #GlobalVoiceForME. As a collective, we increase our power. By uniting our voices, we can influence the trajectory of ME research, treatment, and support.

ME knows no borders, and neither should our efforts to combat it. It is crucial that countries around the world work collaboratively to address this crisis. By fostering international cooperation, sharing research findings, and building recognition in every nation, we can pave the way to mitigate the devastating effects of ME.

Taking action for World ME Day 2024: In the coming months, ANZMES and the World ME Alliance will be announcing actions you can take to create change on May 12th, 2024. A big focus will be building relationships with health ministries of different nations, as they have the power to advocate with the World Health Organization. Your involvement will be vital to this effort, so keep your eyes peeled for more info coming soon.

Alongside this, we are developing tools for you to use, like our much-loved custom poster maker, a new film, graphics, posters, and more. We can’t wait to share these with you!

In the meantime:

  • Spread the Word: Use your social media platforms to share information about ME. Let your friends, family, and followers know that World ME Day 2024 is coming on May 12th, and that you’ll be asking them to join as a #GlobalVoiceForME!
  • Educate Yourself: Knowledge is a powerful tool. Learn about ME in your country through  ANZMES or reach out to others online to become part of the global ME community. Your voice matters, and you can contribute to breaking down misconceptions and stigmas surrounding the illness.

As we prepare for World ME Day 2024, we hope you will stand united with ourselves and the World ME Alliance, raising our voices to be heard around the globe. By growing the #GlobalVoiceForME, we can accelerate change, fostering a future where those affected by Myalgic Encephalomyelitis find hope, understanding, and ultimately, a cure. Together, let’s turn awareness into action and transform the landscape for individuals living with ME.

To mark #WorldMEDay, a number of councils around New Zealand are lighting up public landmarks in blue on Friday night, May 12th, 2023 – Press Release

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Date: 12/05/2023
For immediate release


Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS) is a disabling, chronic and complex disease affecting more than 20,000 New Zealanders.
The hallmark symptom of ME is post-exertional malaise (PEM) – a worsening of symptoms after physical, mental, or emotional exertion. These episodes are sometimes referred to as “crashes,” and may last days, weeks, or permanently.
Visit www.anzmes.org.nz/voices-of-me to learn more about what it is like living with this
condition and increase your understanding of ME/CFS and Post-exertional malaise.


For more information about World ME Day and ME/CFS visit:
www.anzmes.org.nz/worldmeday2023/

Thank you to these sites for shining a light for people affected by ME/CFS.

Waitaki District Council 

• Craig Fountain in the Oamaru Public Gardens

Ashburton District Council

• Clock Tower

Christchurch City Council

• New Brighton Pier

• Bowker fountain (Victoria Square)

• The Bridge of Remembrance

• Botanical Gardens (Curators House)

• Vaka A Hine (142 Worcester St)

• Scott Statue Plaza (Corner Worcester Street and Oxford Terrace)

Wellington City Council

• Michael Fowler Centre – crown

• The Albatross Fountain (Frank Kitts Park Boat Shed 8, The Lagoon)

• Hikitia Floating Crane (Taranaki St Wharf)

Tauranga City Council

• Wharf Street Lights


If you live near any of these landmarks and can take a photo of the landmark illuminated in blue, please share with us below, or by tagging @LearnFromME.nz or using the LearnFromMEnz hashtag when you post.

Voices of ME

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Post-Exertional Malaise (PEM) is a condition that impacts the energy and recovery system in people with ME/CFS.  

PEM is the worsening of symptoms after physical or mental effort and this can happen one or two days after even minor activity.  People with ME/CFS describe PEM as “crashing” or “collapsing” with a relapse of symptoms.  It is helpful to understand that normally if a person is fatigued after exertion they will rest and then energy will be restored, but in ME/CFS this physical recovery process is dysfunctional.

Everyone’s experience of ME/CFS and PEM is unique but most can agree that PEM is one of the most frustrating aspects of the condition because it can lead to a significant decrease in the ability to perform everyday activities and can stop them from being able to do things that they love.  It can also be confusing or difficult for others to see or understand the struggle because they may appear active and well one day but be bedridden the next, due to this broken energy system.

Here we will share community experiences of what it is like to live with PEM and how it has impacted daily life. We hope these personal stories provide some insight into the realities of ME/CFS and the importance of awareness and support for those living with this debilitating condition.

When i push harder i get sicker... My condition forced me to make sacrifices in order to improve. hashtag learn from me, 12th may, world me day.

Anne-Marie, Complex Chronic Illness Support member, shares her story:

Anne-Marie was diagnosed with ME/CFS in 2019 after several years of declining health. Looking back now, she recognises that it wasn’t normal to always feel tired or ill, or take longer to recover from simple activities than the people around her. 

Previously a professional cellist, music teacher, and arts administrator, she was always on the go. She could push through the pain and fatigue, but would be left bed bound, initially for one day, then two, then weeks afterwards, with headaches, brain fog, full body pain, and debilitating fatigue. 

After her diagnosis of ME/CFS and subsequently POTS (Postural Orthostatic Tachycardia Syndrome), Anne-Marie had to give up her work, music and hobbies, including her role as a volunteer puppy raiser for Mobility Dogs Trust.

A pretty young smiling white woman with long brown hair sitting in a wheelchair, wearing light blue skinny jeans, blue lace up shoes, a striped jumper with shades of grey. Beside her sits her service dog, a labrador, wearing a service dog cape. They are outside, in a tiled courtyard with shrubbery in the background.

Anne-Marie now requires a wheelchair to leave the house, which she is able to do once every week or fortnight, with significant recovery time required afterwards.  

And yet she knows she is lucky to be able to leave the house at all. 

Severe cognitive difficulties leave her unable to do one of the things she loves most – reading. Being largely housebound also left her unable to access many things, including visiting the library, op shops or bookstores. 

In 2021, Anne-Marie started a small business to share her love of books with others, selling secondhand books online, hoping to target other housebound individuals. She has “met” many other chronically ill individuals online, who share similar struggles with their health, isolation, and lack of understanding or available treatments. 

While the business is a labour of love, finding a way to work from home was also necessary to help with the added costs of disability and living with a chronic illness that is not supported or recognised by the government. 

Running a small business from home gives her the freedom and flexibility to work around her severe energy limits, and allows her to feel connected to the rest of the world from bed. But like all good things with ME/CFS, even this small amount of work comes at a steep cost, and wouldn’t be feasible without a large support system. 

Despite no longer being able to read physical books, she relishes the chance to chat about books with people online, and has adapted her hobby into a love of audiobooks. She recognises the privilege and support that has allowed her to adapt her life into something that brings her joy, despite such a truly disabling disease.

I learnt that even seemingly insignificant activities like using a knife and fork, can take huge amounts of energy. Will you hashtag Learn From ME? World ME Day
It's the feeling of having the flu, running a marathon every day, and being hungover, all at once. Hashtag Learn From ME. World ME Day.
When I push harder I get sicker ... ME/CFS derailed my life 25 years ago with loss of job and no longer being able to do activities that I had loved doing such as running, tramping, and cycling. Hashtag Learn From ME 12th May World ME Day
Hashtag Learn From ME visit worldmeday.org World ME Day These words are overlaid over an image of a young white woman, lying in bed with noise cancelling headphones on, and an eye mask. Next to her on the bedside table are various medications, a glass of water.

Kate, ME Support member, shares her story:

Kate was diagnosed with ME 5 years ago after 20 plus years of health challenges triggered from a viral illness. Before this she was hardly ever sick, a school prefect, and played high level sport representing New Zealand for Water Polo. In 2018 her system crashed after pushing through symptoms for too long when numerous doctors weren’t able to help. She suffered with crushing fatigue that did not improve after a full night’s sleep and had to give up work, sports and her social life. She was mostly confined to her home, except for dropping off and picking up her boy from daycare/school and other activities.

Kate also experienced constant body pain, fluctuating headaches, neurological problems resulting in impaired memory and an inability to concentrate and Postural Orthostatic Tachycardia Syndrome (POTS), a dysfunction in the autonomic nervous system. Any physical, mental, or emotional effort would cause worsening of her symptoms and she had to learn to work within a very small energy envelope.Five years on, Kate has made what is known as significant progress in the ME community, with a reduction in symptoms enough that she can work a small number of hours each week. She can attend more activities with her son, however her dreams of dancing and playing masters level competitive sports are not fulfilled and she is accepting that she may never reach these and other dreams she has.

Dr. Goodwin shares of his experience with living with PEM.
World ME Day Pushing hard can make different symptoms worse. These words are overlaid over a graphic of a white person covering their eyes with their hands with a grimace on their face. Their head dissolves into pixellated squares demonstrating the toll that PEM takes on the brain and cognition.
World ME Day. Sensory overload comes from everything everywhere all at once. Graphic of a female holding her hands over her face, with swirls of clouds and waves all around her representing overload of sensors from stimuli.

“For myself I feel like ME/CFS has halted my life. I went from running Ultra Marathons, completing Iron Mans and being on the go every day to now spending days laying down, too weak to even lift my phone up when I’m at my worst.”

I went from my job as a Registered Nurse where I looked after others, giving my all to get them better, to now fighting to get my Dr to understand how unwell I feel. CCI Support has been able to support me better than my own Dr has. I finally felt like I wasn’t alone and now have a plan to actually get better. It’s given me hope that I won’t feel like this forever.”

Complex Chronic Illness Support member.

“Having a chronic illness – feels like there is an invisible barrier between me and the world. Most people don’t understand what it’s like to be behind the barrier.”

Complex Chronic Illness Support member.

“Some days I can manage a couple hours of computer work before I need to stop for the rest of the day. Other days, I can work all day, and I feel grateful for that productivity. However what quickly follows is several days of being bedbound, unable to think clearly, with no energy to function. My pain increases, I get flu-like symptoms, lose my voice, and have a searing headache across my temples.”

ANZMES member.

Watch the Complex Chronic Illness Support members monthly meeting as they discuss Post-Extertional Malaise and its affects on the lived experience: https://youtu.be/fASkYVmQ_zA

We urge those experiencing PEM to pace today for a better tomorrow.
To find out how, visit our World ME Day page.

World ME Day. Pace yourself today for a better tomorrow. These words are overlaid on a graphic of a forest, and grass, sun shining and a dove carrying a branch. In the foreground is a couple. A black man in a wheelchair holding the hand of an asian woman.

Learn about PEM and pacing at our special event on May 12 for World ME Day at LearnFromME on Facebook or our YouTube Channel.

Do you need support? Find out more about the ME/CFS and long COVID organisation or support group in your local area.

Read more lived experiences and personal stories of people living with ME/CFS and long COVID, and create your own poster here: https://worldmealliance.org/worldmeday/custom-poster/ 

World ME Day asks you to learn about the broken energy system in ME/CFS – PRESS RELEASE

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PRESS RELEASE – for immediate release

World ME Day asks you to learn about the broken energy system in ME/CFS

If you’ve never heard of post-exertional malaise (PEM) you’re not alone. But for people living with ME/CFS or long Covid understanding PEM is crucial to managing their illness. World ME Day on May 12 is an opportunity to increase your understanding of this little-known phenomenon.

Post-exertional malaise (PEM) is something that everyone with ME/CFS (Myalgic Encephalomyelitis /Chronic Fatigue Syndrome)  experiences. So what is it? Put simply, PEM is a debilitating and abnormal response to normal activity.

People with ME/CFS and long COVID have what is called an energy envelope. This is the amount of energy they have on any given day to function. Research and experience shows that if a person expends an equivalent amount of energy to the amount they have available they will reduce the symptom flares they experience.

When people with ME/CFS and long COVID push to do more than their energy envelope can cope with, the severity of their symptoms increase. This period of reduced functionality and exacerbation of symptoms typically starts within 12 to 48 hours after the activity or exposure and may last for days, weeks, or may also be permanent.

When PEM hits, people report existing symptoms increase, and that new ones appear including brain fog (executive functioning), flu-like symptoms (sore throat, muscle pain, increased fatigue); muscle weakness; increased sensitivity to noise, light or touch; pain; sleep problems.

How much and what type of exertion triggers PEM is different for each person. Triggers can include:

  • physical (walking around the mall or folding the washing);
  • cognitive (thinking, talking, reading)
  • processing emotional events (both positive and negative stressors)
  • sensory overload (noise, light, touch, smell, temperature, vibrations such as in vehicles)
  • physiological processes (digestion, temperature regulation, fighting infections)
  • orthostatic (sitting or standing upright vs lying down)
  • multi-tasking (even if individually each activity is within their Energy Envelope, e.g. talking while walking, or thinking while in a noisy environment)

Leading ME/CFS researcher Dr Lynette Hodges, Exercise Physiologist, Massey University, says “Individuals with ME/CFS are not lazy or deconditioned. Our research has shown physiological changes for those with ME/CFS. Both planned exercise and even simple activities of daily living can cause PEM.”

PEM is best managed by creating an individualised routine of rest and carefully paced activities within the individual’s current energy envelope. GP Cathy Stephenson states “If there’s one thing to impress upon health providers when it comes to the management of ME/CFS, it’s Pacing. Above all else. Pacing.”

Kate was diagnosed with ME 5 years ago after 20 plus years of health challenges triggered from a viral illness. Before this she was hardly ever sick, a school prefect, and played high level sport representing New Zealand for Water Polo. In 2018 her system crashed after pushing through symptoms for too long when numerous doctors weren’t able to help. She suffered with crushing fatigue that did not improve after a full night’s sleep and had to give up work, sports and her social life. She was mostly confined to her home, except for dropping off and picking up her boy from daycare/school and other activities.

She also experienced constant body pain, fluctuating headaches, neurological problems resulting in impaired memory and an inability to concentrate and Postural Orthostatic Tachycardia Syndrome (POTS), a dysfunction in the autonomic nervous system. Any physical, mental, or emotional effort would cause worsening of her symptoms and she had to learn to work within a very small energy envelope.

Five years on, Kate has made what is known as significant progress in the ME community, with a reduction in symptoms enough that she can work a small number of hours each week. She can attend more activities with her son, however her dreams of dancing and playing masters level competitive sports are not fulfilled and she is accepting that she may never reach these and other dreams she has.

World ME Day: LearnFromME – “ME: the disease where pushing harder can make you sicker.”

Visit the World ME Day information from ANZMES on https://anzmes.org.nz/worldmeday2023/

Follow the Learn From ME page on Facebook  on May 12th to follow the World ME Day campaign. This page is a collaborative initiative between the regional and national ME/CFS organisations:

ANZMES (Associated NZ ME Societies)
Complex Chronic Illness Support
ME Support
MECFS Canterbury
MEISS Otago
ME Awareness NZ
Rest Assured Respite Trust

Find out more about ME/CFS or to take action to support World ME Day by visiting: www.worldmeday.org

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