Latest news with #AssociatedNewZealandMyalgicEncephalomyelitisSociety
Otago Daily Times
17-05-2025
- Health
- Otago Daily Times
Study provides data on life with ME
A new study examining the challenges faced by people with chronic illness highlights areas for improvement. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a long-term illness that can make everyday activities very difficult for those living with it. New research using anonymised government records in Stats NZ's Integrated Data Infrastructure reveals what life is like for people with ME/CFS. The study identified 1902 working-age New Zealanders with ME/CFS who were receiving a benefit and compared their experiences with those not receiving one. Principal investigator University of Otago department of paediatrics and child health senior research fellow Dr Nicholas Bowden said people with ME/CFS used health services far more often. In the past year, 18.8% had visited an emergency department, compared with 12.8% of the general population, and 32.8% had been dispensed 10 or more medications, compared with 14.2%. The study also hinted at diagnostic inequity because Māori and Pasifika were under-represented. "It is certainly not consistent with the general trends of benefit use in the population. "So a low percent of Māori, low percent of Pasifika in this ME group on a benefit is very different to the distribution of ethnicity among that other benefit group. "There is some evidence around access and equities of access to diagnosis." Long-term data on employment, unemployment and benefit reliance showed how debilitating the condition was, he said. Only 18.3% of people with ME/CFS were employed, compared with 83.8% of the general population. Even when looking back one, two or five years, about half of those affected had earned no labour-market income in the preceding five years. "And that's quite a lot higher than the other comparison benefit groups." Co-investigator University of Otago department of biochemistry emeritus professor Warren Tate said the research added weight to discussions with government ministries. He has more than 30 years of experience with the conditions, both as a biomedical researcher and as someone whose family members have lived with ME. "I've done a lot of research now and published internationally on it. "So what I knew was that there were high health needs." However, data from New Zealand suggesting limited access to support services and very low employment was all anecdotal. "There was no data to support that and that made it very difficult for the ME community to argue with the ministry and areas of government to try and get better support." The study supported efforts to secure better access and greater understanding of the challenges posed by the conditions. Dr Bowden noted the population-level data used in the study was the government's own. "They are pretty hard for the government to turn a blind eye to." The research was funded by a grant from the Associated New Zealand Myalgic Encephalomyelitis Society. The study is now under peer review at BMC Public Health.
Scoop
11-05-2025
- Health
- Scoop
World ME Day: A Call For Transformative Action In ME/CFS Care
Press Release – ANZMES ANZMES Urges Leadership to Reclassify ME/CFS and Launch Collaborative Initiatives for New Zealanders. May 12th, World ME Day, marks a pivotal moment to drive systemic change for over 65,000 Kiwis affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and related post-viral conditions. Amid the growing shadow of Long COVID, the Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) highlights the urgent need for equitable recognition, research, and resources. The Crisis: ME/CFS, often overlooked and underfunded, devastates mobility, cognitive function, and quality of life. An alarming 50% of Long COVID sufferers meet ME/CFS criteria, compounding challenges for a vulnerable population. The Cost of Inaction: Failing to address ME/CFS carries significant consequences for individuals, families, and society. Without immediate action, the healthcare system will continue to bear the heavy burden of unrecognised and untreated cases, leading to increased hospitalizations and prolonged disability. Moreover, the economic cost of lost productivity and caregiving responsibilities places unnecessary strain on communities and the wider economy. ANZMES' Proposals for Change: Formal Partnership for Excellence: Collaborate with ANZMES to establish a Centre of Excellence, prioritising gold-standard care, research, and education. Cross-party Group Formation: Introduce a dedicated parliamentary group to harmonise national policy with global best practices. Disability Reclassification: Align New Zealand with international standards to guarantee fair access to essential supports. Addressing Systemic Gaps: Research underscores that individuals with ME/CFS suffer from significantly reduced health-related quality of life, ranking even lower than those with depression or multiple sclerosis. Despite this, New Zealand's current healthcare system is marked by critical gaps, including: Recognition Deficit: ME/CFS is not consistently acknowledged as a debilitating condition, leading to inequities in access to care and support services. Outdated Treatment Protocols: Reliance on ineffective or disproven approaches leaves patients vulnerable to harm. Limited Specialist Resources: Many regions lack trained professionals and specialized facilities, disproportionately affecting rural and underserved populations. Underfunded Research: New Zealand trails behind in funding biomedical research for ME/CFS, delaying advancements in care. Fragmented Collaboration: Poor coordination between healthcare providers and policymakers limits the development of cohesive, patient-centered strategies. ANZMES President, Fiona Charlton, calls on policymakers to act decisively: 'The voices of 65,000 New Zealanders cannot be ignored. This World ME Day, let's ensure that ME/CFS care transforms from marginalised to world-leading.' ANZMES, the National Advisory on ME/CFS (and associated conditions), is spearheading a campaign calling for urgent government action to address systemic healthcare gaps and improve the quality of life for these vulnerable populations. Research underscores that individuals with ME/CFS suffer from significantly reduced health-related quality of life, ranking even lower than those with depression or multiple sclerosis. Despite this, many in New Zealand face inadequate medical support, outdated treatment protocols, and a lack of specialised facilities—leaving the most severely affected without essential care. Drawing Inspiration: Examples of Global Success: Transformative change is possible. Internationally, countries like Norway, Australia, and the UK provide compelling examples: In Norway, dedicated funding for biomedical research into ME/CFS has accelerated advancements in diagnostics and treatment. The United Kingdom has recognised post-viral illnesses, including ME/CFS, as a public health priority, establishing support frameworks and raising awareness. The All-Party Parliamentary Group (APPG) has driven reforms in care pathways and funding allocations, enhancing access to resources and recognition of ME/CFS within the NHS. These initiatives demonstrate that meaningful progress can be achieved through robust policy, funding, and stakeholder collaboration. In Australia, the government committed $1.13 million to Emerge Australia to integrate ME/CFS into healthcare, research, and education. This funding supports sustained advocacy and elevates ME/CFS care into national health policy frameworks. In New Zealand, the Government's engagement with Rare Disorders NZ, forming a cross-party parliamentary group, demonstrates a pathway for structured partnerships that could be emulated with ANZMES for addressing policy and practice for ME/CFS and post-viral conditions. Join Us: Let's Drive Change ANZMES stands ready to collaborate with decision-makers. Together, we can uplift lives and set a global benchmark in ME/CFS care. This year, ANZMES invites its members, allies, and the broader public to join the campaign by sending lobbying letters to their local MPs or relevant portfolio ministers. These letters advocate for tangible change and highlight the immediate need for improved disability support and healthcare access. A draft letter is available on our website, guiding members on how to amplify their voices effectively. Charlton emphasises, 'We cannot afford another year of inaction. On World ME Day, we urge the government to prioritise the health and dignity of all New Zealanders with ME/CFS and Long COVID.' We encourage everyone to stand in solidarity with those affected by ME/CFS. Together, we can create a system that supports and uplifts those in need. For more details and to access resources, visit or contact us at .
Scoop
11-05-2025
- Health
- Scoop
World ME Day: A Call For Transformative Action In ME/CFS Care
May 12th, World ME Day, marks a pivotal moment to drive systemic change for over 65,000 Kiwis affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and related post-viral conditions. Amid the growing shadow of Long COVID, the Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) highlights the urgent need for equitable recognition, research, and resources. The Crisis: ME/CFS, often overlooked and underfunded, devastates mobility, cognitive function, and quality of life. An alarming 50% of Long COVID sufferers meet ME/CFS criteria, compounding challenges for a vulnerable population. The Cost of Inaction: Failing to address ME/CFS carries significant consequences for individuals, families, and society. Without immediate action, the healthcare system will continue to bear the heavy burden of unrecognised and untreated cases, leading to increased hospitalizations and prolonged disability. Moreover, the economic cost of lost productivity and caregiving responsibilities places unnecessary strain on communities and the wider economy. ANZMES' Proposals for Change: Formal Partnership for Excellence: Collaborate with ANZMES to establish a Centre of Excellence, prioritising gold-standard care, research, and education. Cross-party Group Formation: Introduce a dedicated parliamentary group to harmonise national policy with global best practices. Disability Reclassification: Align New Zealand with international standards to guarantee fair access to essential supports. Addressing Systemic Gaps: Research underscores that individuals with ME/CFS suffer from significantly reduced health-related quality of life, ranking even lower than those with depression or multiple sclerosis. Despite this, New Zealand's current healthcare system is marked by critical gaps, including: Recognition Deficit: ME/CFS is not consistently acknowledged as a debilitating condition, leading to inequities in access to care and support services. Outdated Treatment Protocols: Reliance on ineffective or disproven approaches leaves patients vulnerable to harm. Limited Specialist Resources: Many regions lack trained professionals and specialized facilities, disproportionately affecting rural and underserved populations. Underfunded Research: New Zealand trails behind in funding biomedical research for ME/CFS, delaying advancements in care. Fragmented Collaboration: Poor coordination between healthcare providers and policymakers limits the development of cohesive, patient-centered strategies. ANZMES President, Fiona Charlton, calls on policymakers to act decisively: "The voices of 65,000 New Zealanders cannot be ignored. This World ME Day, let's ensure that ME/CFS care transforms from marginalised to world-leading." ANZMES, the National Advisory on ME/CFS (and associated conditions), is spearheading a campaign calling for urgent government action to address systemic healthcare gaps and improve the quality of life for these vulnerable populations. Research underscores that individuals with ME/CFS suffer from significantly reduced health-related quality of life, ranking even lower than those with depression or multiple sclerosis. Despite this, many in New Zealand face inadequate medical support, outdated treatment protocols, and a lack of specialised facilities—leaving the most severely affected without essential care. Drawing Inspiration: Examples of Global Success: Transformative change is possible. Internationally, countries like Norway, Australia, and the UK provide compelling examples: In Norway, dedicated funding for biomedical research into ME/CFS has accelerated advancements in diagnostics and treatment. The United Kingdom has recognised post-viral illnesses, including ME/CFS, as a public health priority, establishing support frameworks and raising awareness. The All-Party Parliamentary Group (APPG) has driven reforms in care pathways and funding allocations, enhancing access to resources and recognition of ME/CFS within the NHS. These initiatives demonstrate that meaningful progress can be achieved through robust policy, funding, and stakeholder collaboration. In Australia, the government committed $1.13 million to Emerge Australia to integrate ME/CFS into healthcare, research, and education. This funding supports sustained advocacy and elevates ME/CFS care into national health policy frameworks. In New Zealand, the Government's engagement with Rare Disorders NZ, forming a cross-party parliamentary group, demonstrates a pathway for structured partnerships that could be emulated with ANZMES for addressing policy and practice for ME/CFS and post-viral conditions. Join Us: Let's Drive Change ANZMES stands ready to collaborate with decision-makers. Together, we can uplift lives and set a global benchmark in ME/CFS care. This year, ANZMES invites its members, allies, and the broader public to join the campaign by sending lobbying letters to their local MPs or relevant portfolio ministers. These letters advocate for tangible change and highlight the immediate need for improved disability support and healthcare access. A draft letter is available on our website, guiding members on how to amplify their voices effectively. Charlton emphasises, 'We cannot afford another year of inaction. On World ME Day, we urge the government to prioritise the health and dignity of all New Zealanders with ME/CFS and Long COVID.' We encourage everyone to stand in solidarity with those affected by ME/CFS. Together, we can create a system that supports and uplifts those in need. For more details and to access resources, visit or contact us at info@
Scoop
29-04-2025
- Health
- Scoop
ANZMES Advocates For Equitable Healthcare In Regulatory Reform Submission
ANZMES (The Associated New Zealand Myalgic Encephalomyelitis Society) is proud to announce its detailed submission to the Ministry of Health as part of the consultation on modernising health workforce regulation in New Zealand. This important initiative represents a key opportunity to advocate for a healthcare system that prioritises equity, inclusivity, and patient-centred care. In our submission, ANZMES emphasised the pressing need for systemic change, outlining practical and impactful solutions to enhance healthcare delivery for individuals with ME/CFS and other underserved communities. Key recommendations included: Establishing integrated care models to support patients with complex conditions. Implementing patient feedback mechanisms to ensure healthcare policies align with patient needs. Advancing awareness through public campaigns about ME/CFS and related conditions. Promoting mandatory upskilling and education through CME-accredited evidence-based programmes and resources. Championing the creation of a Centre of Excellence for ME/CFS, a transformative initiative to drive research, education, and patient advocacy. ANZMES also addressed key consultation questions, advocating for inclusive regulation that upholds safety while fostering workforce sustainability. Our recommendations included streamlining processes for overseas-trained professionals and supporting culturally responsive care practices to address the unique needs of Māori, Pasifika, tangata whaikaha disabled, and other underserved populations. 'Systemic healthcare reform is not just about meeting today's challenges—it's about ensuring a sustainable, inclusive system for generations to come,' said Fiona Charlton, President at ANZMES. 'This submission reflects ANZMES's unwavering commitment to driving positive change for all New Zealanders.' We encourage our community and supporters to stay engaged as this important consultation progresses. Together, we can create a healthcare system that serves everyone with fairness, compassion, and innovation.
Scoop
24-04-2025
- Health
- Scoop
ANZMES Highlights Lessons From The COVID-19 Pandemic In Submission To Royal Commission
Press Release – ANZMES ANZMESs submission reflects a steadfast commitment to advocating for systemic reform and fostering collaboration with policymakers, healthcare providers, and communities to build a resilient and equitable healthcare system. ANZMES (The Associated New Zealand Myalgic Encephalomyelitis Society) has made a detailed submission to the Royal Commission of Inquiry into COVID-19 Lessons Learned, underscoring the need for equitable and inclusive public health measures in future pandemic responses. Drawing on over 40 years of expertise supporting individuals with ME/CFS, ANZMES' submission reflects the unique experiences and challenges faced by vulnerable populations during the pandemic. It emphasises actionable lessons to strengthen public health planning, safeguard chronic illness communities, and foster trust in healthcare systems. Key insights from the submission include: Addressing systemic gaps in vaccine safety protocols, adverse reaction reporting, and mandates, with tailored guidance for vulnerable populations like those with ME/CFS and post viral conditions. Reinforcing the importance of equitable lockdown measures, including flexible service delivery and targeted mental health support for vulnerable populations, including chronically ill individuals. Promoting inclusive design of testing, tracing, and public health technologies to ensure accessibility for populations with cognitive impairments and limited mobility. Advocating for ongoing support for post-viral illnesses through the establishment of a Centre of Excellence, fostering research, education, and patient-centered care. 'The COVID-19 pandemic revealed critical gaps in the recognition and support of individuals with chronic illnesses, like ME/CFS and long COVID,' said Fiona Charlton, President of ANZMES. 'Our submission calls for proactive and inclusive strategies to ensure that these populations are no longer overlooked in future public health crises.' ANZMES's submission reflects a steadfast commitment to advocating for systemic reform and fostering collaboration with policymakers, healthcare providers, and communities to build a resilient and equitable healthcare system. Notes: Understanding ME/CFS and long COVID Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a long-term, multi-systemic illness aecting the nervous, endocrine, autonomic, cardiovascular, and immune systems.1It is often triggered by a viral illness and involves overwhelming fatigue and other symptoms that range in severity. Patients experience severe fatigue, 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.2 3 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.4 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.5 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.6 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.7 8 9 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.10 1 Grach, S.L., Seltzer, J., Chon, T. Y., & Ganesh, R. (2023). Diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome. Mayo Clinic Proceedings, 98(10), 1544-1551. Link. 2 Chang, C.J., Hung, L. Y., Kogelnik, A.M., Kaufman, D., Aiyar, R.S., Chu, A.M., Wilhelmy, J., Li, P., Tannenbaum, L., Xiao, W., & Davis, R.W. (2021). A Comprehensive Examination of Severely Ill ME/CFS Patients. Healthcare, 9(10), 1290. DOI. 3 As per footnote 1. 4 Abramo, B., Joshi, S., Herman, E., Silver, J. (2024). BMJ Best Practice: long COVID. Straight to the point of care. Link. 5 As per footnote 1 & 3. 6 WhnfxgX3E6eqYshXDYz2xHZi2aEJiQ_aem_oBwZAag9KRFaIljqeu5LGw 7 Friedberg, F., Bateman, L., Bested, A.C., Davenport, T., Friedman, K.J., Gurwitt, A., Jason, L.A., Lapp, C.W., Stevens, S.R., Underhill, R.A., Vallings, R. (2014). Chronic fatigue syndrome myalgic encephalomyelitis: Primer for clinical practitioners 2014 edition. International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis IACFS/ME. 8 Rowe, P. C., Underhill, R. A., Friedman, K. J., Gurwitt, A., Medow, M. S., Schwartz, M. S., Speight, N., Stewart, J. M., Vallings, R., & Rowe, K. S. (2017). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer. Frontiers in pediatrics, 5, 121. DOI. 9 Maeda, K. I., Islam, M. F., Conroy, K. E., & Jason, L. (2023). Health outcomes of sensory hypersensitivities in myalgic encephalomyelitis/chronic fatigue syndrome and multiple sclerosis. Psychology, health & medicine, 28(10), 3052–3063. DOI. 10 Solve M.E. (2021). Solve M.E. Patient and Caregiver Resource Guide: Post Exertional Malaise (PEM) and Rest. Link. 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 aected 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 eectively, 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 aect people living with ME, long COVID, fibromyalgia, and dysautonomia.
