MECFS

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  • Outdated Treatment Protocols: Reliance on ineffective or disproven approaches leaves patients vulnerable to harm.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

Doctors Called to Advocate for Change: Ending Benefit Cuts for Hospitalised Patients and Addressing Systemic Care Gaps

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[Image: Phyllis Poon on Unsplash]

The Aotearoa New Zealand Myalgic Encephalomyelitis Society (ANZMES) has released a call to action urging healthcare providers to advocate for equitable policies and compassionate care for patients living with chronic illnesses such as Myalgic Encephalomyelitis (ME/CFS), Long COVID, and other complex conditions.

The NZ Doctor Rata Aotearoa published the opinion piece by ANZMES president, Fiona Charlton, on Tuesday 29th April 2025, with content available exclusively to subscribers.

A poignant example of the challenges faced by vulnerable patients is the case of Rhiannon Purves, who has ME/CFS and dysautonomia. During a prolonged hospital stay, she was subjected to New Zealand’s hospital benefit reduction policy, which drastically reduced her weekly benefit to $56.58, leaving her unable to afford critical living expenses.  

“This policy imposes severe financial and emotional hardships on hospitalised individuals, often compounding their medical challenges,” says Fiona Charlton, President of ANZMES. “Doctors have an essential role in advocating for their patients by championing policy change, assisting with bureaucratic processes, and addressing systemic inequities.”

The pressing need for action extends beyond policy reform. Patients with ME/CFS and Long COVID frequently encounter systemic care gaps, including misdiagnoses and outdated treatment protocols that worsen their conditions. ANZMES highlights practical steps for healthcare providers, including: 

– Writing detailed advocacy reports to ensure patients receive necessary care and support.  

– Participating in Continuing Medical Education (CME) training on ME/CFS, available through ANZMES’s Know M.E. Series and My Health Hub.  

– Supporting initiatives like ANZMES’s petition to abolish benefit cuts after 13 weeks of hospitalisation.  

“Doctors are not only caregivers but also key advocates for systemic change,” says Charlton. “By supporting vulnerable patients, healthcare providers can drive policies that prioritize fairness, inclusivity, and improved care outcomes.”  

ANZMES invites healthcare professionals and the broader community to join their efforts by signing the petition on Action Station and engaging with educational resources to better understand ME/CFS and Long COVID.  

Together, we can reimagine a healthcare system where no patient is left behind.  

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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PRESS RELEASE – Advocates Call for Urgent Policy Change to Protect Hospitalised Kiwis from Financial Hardship 

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For immediate Release:

Petition Gains Momentum to End Benefit Cuts for Hospitalised Individuals, Highlighting the Story of Rhiannon Purves

Advocates across New Zealand are calling on the government to urgently review a policy that reduces benefits to $56.58 per week for individuals hospitalised for over 13 weeks. This policy has left vulnerable individuals, like 34-year-old Rhiannon Purves, unable to afford essential medications and personal items while battling severe illness.  

Photo Source: Re news

Rhiannon, who suffers from ME/CFS, was bedridden in Wellington Hospital for months. Her benefit was slashed from $480 to $55 per week, leaving her unable to meet basic living expenses. Advocates say this automated reduction process exacerbates the suffering of those already facing immense physical and emotional challenges.  

Advocates are urging the government to:

1. End the automatic reduction of benefits for hospitalised individuals.  

2. Implement a case-by-case review process to assess individual needs.  

3. Ensure financial security for all, regardless of their circumstances.  

“This policy punishes people when they are at their most vulnerable,” said Fiona Charlton, ANZMES President. “We need a welfare system that protects, not penalises, those who rely on it during critical times.”  

Even when patients are gravely ill and hospitalised, their financial obligations do not pause. Mortgages, rent, insurance premiums, subscription fees, and other living expenses continue to accumulate. For those in shared accommodations, contributions toward utility bills must still be made—unlike individuals living alone, who might have the option to disconnect services temporarily.

Additionally, many patients as severely unwell as Rhiannon are unable to consume hospital-provided meals. Instead, they rely on liquid nutrition and essential supplements, leading to ongoing expenses even while confined to the hospital.

Patients like Rhiannon often face the additional burden of purchasing essential medications privately because the hospital system fails to provide the necessary prescriptions. This issue arises when hospital doctors either misattribute complex medical conditions to psychological causes or fail to fully understand associated conditions, leading to the omission of crucial treatments. In many cases, these medications are consistently prescribed by GPs who recognise and address their patients’ needs. However, the lack of alignment within the healthcare system forces patients to bear unnecessary financial and health burdens for treatments that should be accessible through public healthcare. Cutting benefits under such circumstances only exacerbates an already untenable situation, as $56.58 per week is grossly inadequate to cover even the most basic living and medical expenses.

The petition is open for signatures at Fairness for the Hospitalised: Stop Benefit Cuts After 13 Weeks Advocates are calling on the public, community organizations, and policymakers to join the movement for fairness and compassion.  


PRESS RELEASE – ANZMES Calls for Equitable Tax Policies to Sustain Charitable Impact

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ANZMES (The Associated New Zealand Myalgic Encephalomyelitis Society) has submitted a detailed response to the government’s consultation on tax exemptions for charities and not-for-profits (NFPs), urging them to support rather than hinder charitable efforts across Aotearoa/New Zealand. The submission highlights the urgent need to preserve critical tax relief measures for charitable organisations, ensuring that they can continue delivering essential services to vulnerable communities.

The response warns that taxing income from mission-aligned business activities, such as online stores or op shops, would jeopardise the financial sustainability of smaller charities. It could also reduce their ability to fund advocacy, education, and research initiatives for underrepresented conditions like ME/CFS.

“ANZMES exists to bridge gaps in understanding, support, and research for ME/CFS,” said Fiona Charlton, President. “We rely on innovative, mission-aligned funding solutions to fulfil our purpose. Taxing these efforts would divert resources away from the people who need them most.”

Key Points from ANZMES’ Submission:

1. Mission-Driven Income Should Remain Exempt:

   – Income from mission-aligned activities directly supports the organisation’s advocacy, education, and patient resources. Taxing this income would erode the charity’s capacity to deliver its mission.

2. Public Trust and Donor Confidence:

   – Taxing revenue risks undermining public trust in charities and donor intentions. Restricted funds like the Kathy Foley Trust, which supports diagnostic and emergency patient needs, exemplify the necessity of preserving exemptions.

3. Volunteer Contribution Recognition:

   – ANZMES depends on over 2,500 volunteer hours annually to provide cost-effective services. Imposing additional taxes on its income undervalues this societal contribution.

4. Equitable Tax Thresholds:

   – Current thresholds for charity business income exemptions, such as the $1,000 deduction, are outdated. ANZMES advocates for a higher exemption threshold to reflect the realities of small charities’ operations.

“We are committed to ensuring that New Zealand’s tax system reflects the values of fairness, inclusivity, and support for the community,” added Charlton. “Maintaining tax exemptions for mission-driven income is essential for the survival and growth of organisations like ANZMES, which play a vital role in addressing gaps in government and private sector support.”

ANZMES invites policymakers and the public to engage in meaningful dialogue to ensure that tax policies support, rather than hinder, charitable efforts across Aotearoa.

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PRESS RELEASE – Coalition Calls for Urgent Reforms to Stabilise Disability Support Systems and Address Inadequacies in Aotearoa

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A united group of national advocacy organisations has made a comprehensive submission  calling for significant changes to Aotearoa/New Zealand’s Disability Support System (DSS). Their submission comes as part of the government’s consultation on stabilising and improving DSS, with a sharp focus on ensuring equity, transparency, and sustainability.

The coalition, representing a diverse range of conditions and communities, warns that the current DSS framework is neither equitable nor sustainable – failing many disabled individuals and their families. The group’s recommendations prioritise improving needs assessments, addressing service inequities, and providing flexible funding to support individual requirements. These reforms are critical for better aligning the system with the realities faced by those who rely on disability support services and ensuring that all those who meet the definition of disability receive the care they desperately need.

“This is a pivotal moment for addressing the inadequacies of the current DSS framework,” said Fiona Charlton, President of ANZMES. “We are calling on the Ministry to adopt a more inclusive, transparent, and responsive system that accounts for all individuals living with a disability, and their families.

Key Recommendations in the Submission:

1. Fair and Transparent Needs Assessment Processes: The coalition advocates for greater flexibility in assessment settings, improved pre-assessment communication, and tools that reflect the diversity and fluctuating nature of disabilities.

2. Recognition of Carers’ Needs: Acknowledging the essential role of carers and incorporating their financial, emotional, and physical wellbeing into the assessment process.

3. Flexible Funding Reform: Ensuring funding allocations address individual needs effectively, including technology, accessibility supports, and a clear appeals process for denied funding.

4. Addressing Service Gaps: Introducing equitable solutions to overcome the “postcode lottery” that leaves many regions underserved.

The coalition’s submission is further supported by the Critical Issues and Challenges in Current DSS: A Consumer Perspective, report sent to the Ministry in August 2024. This report amplifies the lived experiences of disabled individuals, carers, and whānau, underscoring the urgent need for reform.

“We cannot afford to overlook these issues any longer,” continued Charlton. “Disabled individuals and their families have waited far too long for a system that truly supports their needs. This is an opportunity for the government to show leadership and deliver meaningful reforms now and for future generations.

By addressing these issues now, the government has a chance to create a more equitable and inclusive system. This is about dignity, respect, and ensuring everyone in our community has the support they need to thrive.”

The coalition invites government officials, community leaders, and the wider public to review the submission and lend their voices to this critical advocacy effort. Together, we can create a Disability Support System that reflects the principles of kotahitanga—unity and inclusivity.

The coalition of organisations—including ADHD New Zealand, ANZMES, Autism New Zealand, Complex Chronic Illness Support, Ehlers-Danlos Syndromes New Zealand, Epilepsy New Zealand, Foetal Anti-Convulsant Syndrome New Zealand, FASD-CAN Incorporated Aotearoa, Rare Disorders NZ, and Tourettes Association of New Zealand—represents a diverse range of conditions that currently fall through the cracks of the existing DSS framework.

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Press Release – ANZMES Awards $25K Grant and $10K in Scholarships to Advance ME/CFS and long COVID Research 2024

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For Immediate Release – 8/10/2024

The Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) is delighted to announce the recipients of their 2024 Research Grant and Scholarship Programme. ANZMES, the leading National Advisory on ME launched the programme in 2023 to support groundbreaking research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and long COVID. The programme can offer two $25,000 research grants to postgraduate students and academic researchers, specifically aimed at advancing laboratory-based studies. In addition, four $5,000 scholarships are available to support students undertaking ME/CFS and long COVID research in fields such as Health Sciences, Public Health, and Humanities. The programme is designed to foster a new generation of researchers and contribute vital knowledge to these under-researched conditions, which affect millions globally​​.

“This is our second year offering the programme, and we are very pleased to have received strong scholarship applications this year. We encourage postgraduate students to consider their Masters/PhD topics now, for next year’s funding round. In programmes with relatively low costs, scholarships can be used to help pay fees or study and living expenses,” says Fiona Charlton, ANZMES president.

This year, ANZMES has selected three outstanding researchers whose innovative projects will contribute to the growing body of knowledge in this field. Each recipient has been awarded significant funding to pursue their work, advancing ME/CFS and long COVID research in critical new directions.

Meet the 2024 Grant and Scholarship Recipients:

Associate Professor Mona Jeffreys and Kahurangi Dey
Victoria University of Wellington
Project: Exploring the Prevalence and Determinants of Food Insecurity in People with ME/CFS and/or Long COVID
This study, conducted in partnership with research candidate Kahurangi Dey, investigates food insecurity among individuals with ME/CFS and long COVID. The project will not only quantify the prevalence of food insecurity but will also contribute to the creation of an ME/CFS Registry in New Zealand, a vital resource for future research​.

“We are delighted to have been awarded a research grant from ANZMES. For many decades, research into ME/CFS has been overlooked, and these grants fill an important gap. Our research explores aspects of food insecurity in people with ME/CFS and Long Covid. Kahurangi is an expert in kai research, and Mona an expert in Long Covid, as well as living with ME/CFS. Of interest to us are the complexities and interrelationships between food access and utilisation for people living with chronic illnesses. We will be designing and distributing an online survey about food insecurity and barriers that people with ME/CFS and Long Covid face. Respondents will also be asked if they would like to be included in an ME/CFS Registry – it is essential that we start to count how many people are living with ME/CFS.” – Mona and Kahurangi

Melissa Blanc
Auckland University of Technology
Project: Exercise in ME/CFS Patients: Helpful or Harmful? A Systematic Review
Melissa Blanc’s systematic review aims to evaluate the safety and efficacy of exercise programmes for ME/CFS patients. With ongoing controversy regarding exercise as a treatment for ME/CFS, this research will address potential harms and benefits to ensure that exercise recommendations are based on high-quality evidence​.

“It is exciting to be selected for this scholarship. I hope this systematic review will be a valuable contribution to the body of evidence on the topic of exercise use in ME/CFS patients, and that it will help to improve the quality of life of ME/CFS patients.” – Melissa

Beth Hobbs
Victoria University of Wellington
Project: Psychological Support for ME/CFS Patients in Canterbury
Beth Hobbs, is applying to become a registered psychology intern to work with people and will eventually be working with ME/CFS patients in Canterbury to provide critical psychological services. This project focuses on the impact of long-term illness and psychological support to improve patient outcomes, with a particular emphasis on housebound patients​.

“Becoming a psychologist in the field of health has been a long-standing passion of mine. I feel incredibly honoured to have received the ANZMES Scholarship. The scholarship is intended to be used towards funding psychology registration training and an internship working directly with those experiencing symptoms of ME/CFS in Canterbury. ME/CFS has always been a strong focus in my work and study, which has strengthened with the rise of Long COVID. The negative psychological and emotional effects of ME/CFS can cause significant distress for the individual and their whānau, and deeply concerns the ME/CFS community. It will be an absolute privilege to work towards ameliorating people’s distress and assist those living with this challenging condition to enjoy a better quality of life and sense of self. My sincere gratitude to ANZMES for this opportunity!” – Beth

Associate Professor Mona Jeffreys and Kahurangi Dey (co-applicants) will receive a $25,000 grant, while Melissa Blanc and Beth Hobbs will each receive $5,000 scholarships to support their work.

ANZMES President, Fiona Charlton, expressed her excitement about the calibre of this year’s recipients “Each year, we are inspired by the dedication and innovation of our researchers. This year’s recipients not only highlight the urgent need for more research into ME/CFS and Long COVID but also embody the promise of future breakthroughs. We are proud to support their vital work.”

ANZMES continues to lead the charge in supporting vital research that seeks to improve the lives of those affected by ME/CFS and long COVID. Applications for next year’s grants will open in May 2025.

ME/CFS is a complex, debilitating, and often misunderstood medical condition, affecting millions of people worldwide, including at least 25,000 in New Zealand. Despite its widespread impact, there is remarkably little research or funding available.

This ANZMES funding programme was made possible by the generous support of members.

The Grant was awarded by ANZMES on the recommendation of their Grants and Scholarships Subcommittee.

Next year’s funding applications open 31st May 2025.

Visit anzmes.org.nz  for more information, grant regulations, and application forms.

What is ME/CFS?

Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a complex, chronic illness which affects multiple body systems, including the neurological, immune, and endocrine systems. It manifests through a variety of symptoms such as profound exhaustion, cognitive dysfunction, muscles and joint pain, unrefreshing sleep, headaches, sensory issues, and more. These symptoms are not alleviated by rest and are exacerbated by physical or mental activity. Prevalence in Aotearoa/NZ is estimated due to insufficient coding and tracking in the health system. Prorated overseas data (pre-pandemic) suggests that there were at least 25,000 people living with ME/CFS, that’s 1 in 250 adults and 1 in 134 youth. Based on US medical insurance claims, the NZ figure is more likely to be 45,000. With up to fifty percent of long COVID cases meeting the diagnostic criteria for ME/CFS these numbers will rise exponentially. ME/CFS is currently classified as a “chronic illness” rather than a disability in New Zealand, which poses significant challenges for policy recognition, support services, and funding. As a consequence, the lack of awareness and education among healthcare professionals leads to inaccurate patient diagnosis, and ineffective treatment and management plans.

Who is ANZMES?

We are the National Advisory on ME/CFS (and associated conditions) in Aotearoa/New Zealand. With four decades of knowledge and experience, we are the trusted leaders in ME/CFS research, representation, and education. 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/CFS 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 best practice. We represent the ME/CFS voice nationally in our advisory capacity, and globally through advocacy and leadership, as a founding member of the World ME Alliance.

PRESS RELEASE – Critical Reforms Needed for ME/CFS Patients in Aotearoa: Coalition Calls on HDC for Action

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The Health and Disability Commissioner (HDC) is currently reviewing the Health and Disability Commissioner Act 1994 (the Act) and the Code of Health and Disability Services Consumers’ Rights (the Code). These pieces of legislation aim to promote and protect the rights of health consumers and disability services consumers, ensuring the fair, simple, speedy, and efficient resolution of complaints relating to the infringement of these rights.

In a bid to drive critical improvements in healthcare services for ME/CFS patients, the coalition of organisations representing the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) community in Aotearoa New Zealand has submitted a comprehensive report directly to the HDC The submission calls for critical improvements in healthcare services for ME/CFS patients and highlights current rights violations under the Code.

The report states that ME/CFS patients frequently encounter healthcare providers who lack the necessary knowledge and expertise, leading to substandard care. Currently, there are no senior specialists in ME/CFS in New Zealand, exacerbating the inadequate dissemination of up-to-date clinical guidance. Despite ME/CFS meeting the New Zealand government and United Nations definitions of ‘disability,’ patients are excluded from Disability Support Services (DSS) funding, nor are they supported through Long Term Support – Chronic Health Conditions (LTS-CHC) funding. This has resulted in significant shortfalls in funding for essential services and practical supports that could vastly improve their quality of life. The report also highlights that some health practitioners continue to recommend discredited treatments such as Cognitive Behavioural Therapy and Graded Exercise Therapy without informing patients about the lack of evidence for these treatments and their potential risks. This lack of transparency prevents patients from making informed decisions about their healthcare.

The coalition’s report emphasises that these issues are violations of the Code. Specifically, the right to services of an appropriate standard (Right 4) and the right to be fully informed (Right 6) are being infringed upon. The absence of knowledgeable practitioners and senior specialists means patients are not receiving the care they are entitled to, while the lack of transparency about treatment risks denies them the ability to make informed choices.

In this submission, the collective calls for medical education institutions to ensure comprehensive and up-to-date training on ME/CFS for health professionals. This includes adopting recognised diagnostic criteria, to ensure accurate diagnosis and effective symptom management. Furthermore, it urges that healthcare providers must inform patients when recommending treatments that lack a quality evidence base or may be harmful. Ensuring transparency and informed consent is essential to protect patients from harm and enable them to make well-informed decisions about their healthcare. In addition, Health NZ and the Ministry of Health must be held accountable for adequately supporting ME/CFS patients. This includes ensuring that health professionals and support services are sufficiently equipped to meet the specific needs of this patient group and allocating adequate funding and resources for multidisciplinary care and practical supports, such as home help.

ME/CFS patients must receive the adequate diagnosis, care and support they need. If the HDC addresses these critical issues within the Act and the Code, the collective hopes that New Zealand can significantly improve the quality of life for ME/CFS patients and uphold their rights within the healthcare system.

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The submission was compiled by Aotearoa Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collective: 

Severe ME Day 2024 -Safer Hospital Care for Severe ME

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Credit to the World ME Alliance for this content.

Severe ME Day, held on the 8th of August each year, is a significant occasion for the World ME Alliance and the global community affected by Myalgic Encephalomyelitis (ME). This day is dedicated to shedding light on the experience of people with the most severe forms of ME enduring a life of relentless suffering in darkened rooms. The hashtag #SevereMEDay is used to amplify the voices of those with Severe and Very Severe ME, as well as honour those who have tragically lost their lives to this debilitating condition.

ME is a neurological disease with widespread dysfunction of the immune system and impaired cellular energy capacity. Severe ME has been described as a ‘living death’ because of the level of disability and suffering it causes. Severe ME patients are as ill as AIDS patients in the final weeks of life, but can survive in this state for years or decades.

The grave dangers people with Severe ME are exposed to in hospital were underlined at the recent coroner’s inquest in the UK for Maeve Boothby O’Neill. Maeve, a 27 year old woman with Severe ME and resultant malnourishment, died in Oct 2021 following 3 hospital admissions where denial of emergency nutritional care led to her terminal decline.

Current Challenges in Hospital Settings

People with Severe ME experience constant, crushing fatigue and unrelenting pain plus extreme sensitivity to stimuli such as noise and light, leaving them housebound or bedbound. All of these are exacerbated by the hallmark symptom of ME: post-exertional malaise (PEM). PEM is an acute worsening of symptoms after even minimal physical, mental, or emotional exertion. For Severe ME patients, even sensory overload (light, sound, smell, touch) can induce painful and disabling PEM that may last days, weeks, or permanently. Very Severe patients may experience periods of paralysis and are completely reliant on caregivers.

Leaving the house is such a dangerous prospect for people with Severe ME, that they will only consider going to hospital in a dire emergency. Just travelling in a car and interacting at reception could have neurological impacts that trigger a huge reduction in their quality of life for months to follow. A hospital admission is a huge risk and needs to be acknowledged as such by health authorities.

Unfortunately, most individuals with Severe ME report poor experiences in hospital settings. Stigma and misunderstanding, environmental sensitivities and inadequate care too often result in dramatically increased suffering. 

Safer Hospital Care for People with Severe ME

Best practices to prevent exacerbating PEM and causing unnecessary harm:

  1. LISTEN to ME: Listen to people with ME and their carers with lived experience of symptom management. Develop personalised care plans with family members that respect their knowledge of the patient’s unique needs. Do not ignore their requests to protect the patient from PEM. Take advice from ME specialists.
  2. Educate healthcare staff: Provide comprehensive training to healthcare professionals on ME, particularly the severe form of the condition, and common comorbidities. Discredited treatments CBT and GET are inappropriate for Severe patients and may cause deterioration.
  3. Allow advocates: Allow a family member or carer to stay at all times if requested by the patient. Obtain consent from the outset to have a family member or advocacy worker to speak on their behalf.
  4. Safeguard rest: Undisturbed sleep is vital to prevent decline. Respect the patient’s need for strict pacing of activities to survive hospital admission and prevent adrenaline surges. Eliminate all non-essential interaction, move slowly and quietly around the patient.
  5. Ensure a low-stimulus environment: Allocate private rooms that are soundproofed and dimly lit. Minimise chemical or fragrance smells, sensory overload and physical contact. Work with carers to establish sustainable temperature levels and access times.
  6. Support nutritional care: Recognise that people with Severe ME have acute food intolerances and may not have enough energy to swallow or digest. Allow special diet foods, flexible meal times and adjusted feeding positions. Initiate IV hydration, oral nutrition support, enteral tube feeding or parenteral nutrition where appropriate. 
  7. Enable medication management: Most people with ME have extreme sensitivities and potential adverse reactions to drugs. Start medications one at a time and taper up slowly from a fraction of normal dose to avoid harm. 
  8. Respect reasonable adjustments: People with Severe ME need dark glasses, headphones or earplugs and eye-masks. They usually have orthostatic intolerance and need to lie flat at all times. Many are hypermobile and hypersensitive to touch and simple movement may cause pain for weeks afterwards. Be guided by caregivers.
  9. Prioritise communication: It is vital to provide clear and compassionate communication with cognitively compromised patients and their families and involve them in decision-making processes. If patients can tolerate conversation, speak slowly and quietly; provide additional time for them to process information. 
  10. BELIEVE ME: Severe ME has a much lower quality of life than cancer, stroke, MS and chronic renal failure. Patients should be treated with respect, their physiological disease recognised, and their symptoms addressed. Please don’t magnify distress with disdain or medical gaslighting. 

By fostering an informed and compassionate healthcare environment, the hospital experiences and overall well-being of people with Severe ME can be substantially improved.

Alternatives to Hospital Admission 

To assist Severe ME patients to avoid risking extreme PEM and baseline deterioration with unnecessary hospital admissions, the World ME Alliance calls on global medical authorities to offer remote consultations, home visits and palliative care. If hospital admission is imperative, people with energy-limiting conditions should be provided with ME-sensitive transport, dim lights and sofas to lie on in waiting rooms or a stretcher in a separate darkened room.

The onus should be on medical authorities to coordinate multi-disciplinary, connected and continuous care rather than forcing the severely ill to waste scarce energy on driving the process, risking further deterioration. There should also be an acknowledgement of intersectional challenges and poverty compounding difficulties of obtaining treatment.

Further Resources

For more detailed guidance on supporting people with ME/CFS in hospital settings, please refer to the comprehensive booklet Supporting People with ME/CFS in Hospital developed by 25% ME Group, Action for M.E., Blue Ribbon for the Awareness of ME and the ME Association based on UK guidelines. 

#MEAction USA has developed a Health Information Form to help individuals clearly lay out their medical information and needs. 

Finally, check out #MEAction’s Hospital Checklist to help patients with ME plan and pack for a hospital visit. 

With thanks to the Severe ME focus group and resources of Sammy Lincroft m.e_and_more.

PRESS RELEASE – Unified Advocacy Groups Amplify Consumer Voices in Disability Support Services Review

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In a significant demonstration of unity, leading disability and advocacy organisations have come together to amplify the voices of consumers in the review of New Zealand’s Disability Support Services (DSS). This joint submission, sent to the review panel chaired by Sir Maarten Wevers, and including Leanne Spice, and Reverend Murray Edridge, speaks up about the urgent and critical need for inclusive and equitable disability support across the nation. The review has been prompted by budget concerns at Whaikaha for currently recognised conditions receiving these services. However, it is essential for the government and the review panel to acknowledge the broader disability landscape in New Zealand as there is far more disability that goes unrecognised and unsupported. Thousands of individuals who should be entitled to services are not receiving the necessary support.

The coalition of organisations—including ADHD New Zealand, ANZMES, Autism New Zealand, Complex Chronic Illness Support, Ehlers-Danlos Syndromes New Zealand, Epilepsy New Zealand, Foetal Anti-Convulsant Syndrome New Zealand, FASD-CAN Incorporated Aotearoa, Rare Disorders NZ, Stroke Foundation of New Zealand, and Tourettes Association of New Zealand—represents a diverse range of conditions that currently fall through the cracks of the existing DSS framework. This joint effort arises from the discontinuation of the Whaikaha DSS Eligibility Review Advisory Group, which previously served as a vital channel for direct consumer feedback from these organisations.

The submission brings to light several issues experienced by this coalition that urgently need to be addressed to create a fairer and more inclusive DSS.The termination of the Advisory Group has left a void in consumer representation. Incorporating consumer voices in the review process is essential to ensure that support services meet consumer needs, and are both equitable and inclusive. Current DSS criteria exclude many conditions that meet the New Zealand government and the United Nations definition as disabilities. This exclusion results in woefully inadequate support due to insufficient identification, coding, tracking, and funding.

Other key issues highlighted are significant regional disparities in service access due to the “postcode lottery” effect, necessitating integrated support systems across all regions. Systematic barriers, such as the need for high health literacy and effective communication with health professionals, disproportionately affect those with cognitive impairments or complex needs. The current system’s sole reliance on formal diagnoses delays support, creating inequities, particularly between paediatric and adult services. Fragmentation across government agencies results in inconsistent care and additional stress for individuals with disabilities, emphasising the need for better integration. Existing funding mechanisms are inadequate to meet the growing needs, requiring adjustments tied to inflation and increased government investment. Early identification and intervention strategies are crucial for preventing the progression of disabilities and improving long-term outcomes.

The submission recommends revising the DSS eligibility criteria to include a wider range of conditions recognised by the UN and New Zealand government definitions of disability, ensuring these are properly identified, coded and tracked. It calls for improved regional integration to eliminate the “postcode lottery” and silo funding effect, ensuring customer-focused, integrated, and equitable access to services across all regions. The application and assessment processes should be streamlined to be more accessible, particularly for those with cognitive impairments or severe fatigue. Enhancing the NASC processes is essential to reduce the administrative burden on individuals and create a more compassionate support system. Increased funding for DSS is advocated to support all eligible individuals, emphasising the long-term benefits and cost savings of early and consistent support across the life span. The development of integrated care pathways for early intervention services and the implementation of a centralised system for sharing information across agencies are crucial for cohesive care. Additionally, creating a “catch net” for individuals who fall through the cracks of the current system will ensure they receive necessary reassessment and support.

By considering these critical issues and implementing necessary changes in DSS criteria, Aotearoa New Zealand can move towards a more supportive and fair disability support landscape.

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The organisations involved in this submission represent significant segments of the New Zealand population affected by various disabilities:

  • ADHD New Zealand: ADHD New Zealand estimates that around 280,000 people in New Zealand have ADHD, affecting approximately 2.4% of children aged 2-14 years. It is underdiagnosed in adults due to diagnostic criteria initially developed for children.
  • ANZMES (The Associated New Zealand Myalgic Encephalomyelitis Society) and
    Complex Chronic Illness Support:     There are approximately 25,000 – 45,000 people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and potentially over 400,000 when considering those who meet the criteria of long COVID induced ME/CFS.
  • Autism New Zealand: Approximately 93,000 people in New Zealand are on the autism spectrum, translating to about 1 in 54 people.
  • Ehlers-Danlos Syndromes New Zealand: There is likely to be 1:500 people with Ehlers-Danlos Syndrome however, they are currently rated 1:5000 due to lack of coding and tracking, leading to delays and misdiagnoses.
  • Epilepsy New Zealand: Epilepsy is a condition that affects 1 in 100 people, approximately 50,000 New Zealanders. 70% of people living with epilepsy gain good control on anti seizure medication however, 30% will not get control and this has long lasting effects.
  • FACSNZ (Foetal Anti-Convulsant Syndrome New Zealand): The exact prevalence is unknown due to the complexity of diagnosis and underreporting. However, the condition is recognised to be a significant risk for children exposed to anti-seizure medicines during pregnancy.
  • FASD-CAN Incorporated Aotearoa (Fetal Alcohol Spectrum Disorder – Care Action Network): Te Whatu Ora estimates that between 3 – 5% of people born each year may be affected by the effects of prenatal alcohol exposure each year. This implies that around 1800 – 3000 babies, approximately 8 babies per day, may be born annually with FASD.
  • Rare Disorders NZ: Approximately 300,000 New Zealanders, 6% of the population, live with a rare disorder, with half of these individuals being children. Rare disorders, which have a prevalence of 1 in 2,000, encompass over 7,000 distinct conditions, each with varying levels of support needs.
  • Stroke Foundation of New Zealand: An estimated 89,000 are currently living with the effects of their stroke. Over 10,000 strokes occur each year in New Zealand, making it the second-leading cause of death and a leading cause of adult disability.
  • Tourettes Association of New Zealand (TANZ): Tourette Syndrome affects approximately 1 in 100 school-aged children in New Zealand. Up to 85% of individuals with this disability experience co-occurring conditions such as ADHD, OCD, anxiety, and mood disorders​.

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