Latest news with #ANZMES
The Spinoff
4 days ago
- Health
- The Spinoff
ME/CFS patient estimates have doubled – but the disease is still ignored
Tens of thousands of New Zealanders are thought to have myalgic encephalomyelitis (ME), formerly known as 'chronic fatigue syndrome'. Yet the disease remains largely neglected in medicine and politics alike. The number of ME patients, those suffering from chronic fatigue and other symptoms, living in Aotearoa may have doubled in recent years, according to ME Society (ANZMES) estimates. The group has updated its earlier appraisal, drawing on an international prevalence rate based on pooled data. Applying this to our population and adding anticipated new cases triggered by Covid infection, the group's estimate has risen from roughly 25,000 to 65,000. If this estimate is correct, that would be more than the number of New Zealanders with rheumatoid arthritis, lupus and multiple sclerosis combined. Compared to most chronic illnesses, there's only patchy medical and public awareness, little tailored health care, and very little research investment. Aotearoa lacks an official, data-confirmed prevalence rate for ME, but the appraisal from ANZMES appears broadly consistent with estimates from other countries. Emerging studies point to a trend where a large subset of people with persisting Long Covid may be developing ME. Overseas estimates suggest a sky-rocketing of new ME cases since the pandemic began, but the picture in Aotearoa is not yet clear and may differ in light of our initially low Covid spread. It's crucial to remember that Covid hasn't gone away. New Zealanders are still getting infected each week – wastewater testing last week showed the highest Covid levels all year – and every new infection carries a risk of Long Covid. Viruses are a common cause of ME, alongside genetic and other factors, so it makes sense that the Covid virus may also initiate the illness in some people. The pandemic's long tail is likely driving the suspected jump in numbers with ME here. Other contributors include an expected rise in number over time if many aren't recovering, and the effect of a potential undercount in earlier years. ME is a serious, long-lasting illness that stops people from being able to do their usual activities. The disease makes physical and mental exertion difficult, and can dramatically slash how much activity a person can handle. It's way more of a threat than 'chronic fatigue syndrome' suggests. Most patients – up to 75% – need to stop or reduce their work. An estimated one in four are fully housebound or bedbound. With ME, your body's energy battery recharges extremely slowly, and has a much smaller capacity overall. People severely affected may only get a total of 5% (or less) of the energy they had before getting ill, and it can take weeks, months or longer to recharge. Far beyond tiredness, the hallmark feature of ME is 'Post-Exertional Malaise' (PEM) – an extreme worsening of symptoms after even minor physical or mental exertion. This can trigger a 'crash' lasting for days, weeks or longer. Attempting to push through can greatly worsen symptoms and may lead to long-term deterioration. Those with severe ME become extremely disabled, needing fulltime care. Many Long Covid patients have symptoms that match ME: are they the same thing? Not fully, but they seem closely related. Post-Covid ME is a subset of a bigger Long Covid umbrella, which covers various conditions including post-intensive care syndrome and autonomic disorders. Some people have both diagnoses; in future this may change as more is understood. Affecting all ages including kids, ME disrupts the brain, immune system, and metabolism. It's recognised as a physical disease by the World Health Organization (since 1969). Science supports this: multiple studies show many distinct biological abnormalities in people with ME. But ANZMES President Fiona Charlton says she still hears of health professionals here claiming that ME is psychological in nature, based in the mind. In an interview for World ME Awareness, Charlton put the claim to Jaime Seltzer, US patient advocate, Stanford researcher and one of Time Magazine's 100 most influential health leaders. Her response: 'This was never acceptable. But we know so much more than we did in the late 80s, early 90s when these diseases were first beginning to be known, that there's genuinely no excuse for that anymore.' Why is it vital for the public and doctors to understand these illnesses? If people truly realised the serious consequences when patients push too hard, forcing themselves back to work or exercise — they could be helped to avoid getting worse. Bizarrely though, there's been barely any political leadership on either illness in Aotearoa. There was one Health Select Committee inquiry into ME care back in 2012 (with no change or follow-up), little-to-no media advocacy from MPs, and no work programme or policy in the Health Ministry. Our public health system has no dedicated services for ME patients, and no ME specialist doctor. There's one clinic for Taranaki health staff with Long Covid, with no dedicated funding. Other Long Covid pilot clinics were discontinued. Australia is funding biomedical research far more generously than us (though a lot more investment is still needed). Australia's parliament has long completed an inquiry into Long Covid, including investigation of ME. In contrast, the first report of New Zealand's Royal Commission into the Covid response contains a fleeting mention of Long Covid, and made clear – after having sought input from affected (unwell) patients – that Long Covid was seen as outside the scope. In many other countries (e.g. UK, US, Canada, Germany, Austria), at least some MPs or ministers are calling for change. Some sizeable investments in research are under way. And other nations have at least provided a number of specialist services for people with ME and Long Covid, for example the US and UK. ANZMES has been urging political leaders to reclass ME as a disability for more than a decade, and has recently released an urgent call to action for MPs. The condition meets official disability definitions, for both New Zealand and the UN, yet ME patients can't access sufficient disability support services. Some of the most severely sick patients in Aotearoa can only access three hours of caregiver support per day, when they require 24/7 care. Immediate reform is required, the group says, to save the billions of dollars that ME costs the country. Australia's price tag is cited – ME costs Australia's economy about $14.5 billion AUD each year. This figure includes direct health care system costs, out-of-pocket expenses, the cost of accessing health care, and the indirect cost of lost income. The pandemic could only compound the price tag. Researchers here think Long Covid might cost us about $2 billion annually – 0.5% of GDP – in lost productivity. Recent modelling from Germany put the combined cost, for both Long Covid and ME, at 1.5% of GDP in 2024. The cost of doing nothing is high, for our people and our purse. The government must act to prevent further ballooning of these illnesses. ANZMES says solutions are available that can help to improve individual outcomes and reduce healthcare strain. Among other policy actions, they suggest bringing in a new nationwide tracking system – to code, track and report on ME and Long Covid across health services – and to include both diseases in national health research with more sustained funding. The ongoing toll of ME and Long Covid could be minimised by stronger measures to lower the spread of Covid and other infectious diseases, since it's possible to lower or even prevent new cases of chronic illness triggered by pathogens including the Covid virus. This will require action, such as wider eligibility for vaccines and anti-viral treatments, masking measures, and cleaning the air in places like schools and childcare. It's time for our political and health leaders to stop the denial and act – a rising tide of affected New Zealanders can't be ignored.
1News
12-05-2025
- Health
- 1News
Mysterious fatigue illness traps people in their bodies
ME/Chronic fatigue syndrome is a physical disease but misinformation from decades ago claiming it was psychological has resulted in stigma that still impacts the care of patients today. Zoe Madden-Smith looks into the controversy around the mysterious illness for Re: Investigates. Watch it now on TVNZ+. On a good day, Tammy Rumsey can say a short sentence and have her face washed by her mum. On a bad day, she is too weak to turn her head on her pillow. The 23-year-old hasn't been able to leave her bed in a year. She lies in complete darkness and silence with an eye mask and earplugs on. Any light, sound or touch could cause her intense pain. 'This illness has robbed my daughter of her life,' says her mum Glenys Rumsey, who has been her fulltime carer for five years. 'When she's bad, she doesn't have the energy to chew, she doesn't have the energy to swallow.' Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome, is a complex neurological disease that can impact everything from the brain, muscles and heart to the immune, nervous and digestive system. For some, it can look like difficulty thinking and fatigue that doesn't go away with rest. But in severe cases like Tammy's, the illness can stop you from being able to move, eat or even speak. There is no cure and even the exact cause is unknown - but it is often triggered by an attack of the immune system, usually by a virus. Women are also four times more likely to have it than men. And for many it is a life-long illness. With 10-25% of people with ME becoming housebound or bedbound. Associated NZ Myalgic Encephalomyelitis Society Inc (ANZMES), estimates 65,000 New Zealanders have the disease – with Long Covid driving ME rates 15 times higher than before the pandemic. Those who have Long Covid are eight times more likely to develop ME/CFS. But despite it being a physical and extremely debilitating disease, misinformation from decades ago that claimed it was psychological and due to 'hysteria' because more women were affected has resulted in stigma that still persists today. Before having ME/CFS, Tammy was always on the go. She was a surf life saver, a theatre kid and 'was living life to the max,' her mum says. But Tammy got glandular fever when she was 15. At first, she recovered, but in 2020 at university, she noticed she would have memory lapses and started getting so tired she couldn't move. 'She would drop to the ground and freeze or become, like, paralysed for a short period of time,' Glenys says. 'Her friends had been taking her to the emergency department, and while she was waiting and lying on the gurney, she would slowly start to be able to move again so the doctor would say things like, 'Have you got boyfriend problems?' Tammy quit her part-time job and took breaks between semesters. But the illness only got worse and, within a few months, she couldn't sit in a chair. Since June 2024, she hasn't been able to get out of bed. Glenys, a retired nurse, speaks of the impact of the disease on her daughter Tammy and caring for her and others affected by the illness. (Source: Breakfast) As Glenys, a retired nurse, took on the role of caring for her daughter fulltime, she noticed the stark lack of understanding and support for ME/CFS patients – made worse by a health system at breaking point. Living an hour out of Wellington at the time, Glenys struggled to find a GP who could do home visits and Tammy was too unwell to get out of bed. She tried to get hospice to visit but they didn't have the capacity either. So, with no other option, Tammy was admitted to hospital where she stayed for three months. 'I didn't want Tammy to end up in hospital-level care or in a rest home for years on end,' Glenys says. 'She's 23 years old, that's just not what I want for my daughter. And I really want to care for her, whatever it takes.' While Tammy was in hospital, Glenys started texting other women with severe ME in the same hospital. She realised they were all entitled to three hours of funded care a day. So Glenys worked out if she pooled together the hours from other patients, she could hire six support workers and create a shared care home in her house. Glenys is completely unpaid and she and her partner, Dave, have paid out of their own pocket to have their house renovated for people with severe ME. 'We got the thickest carpet underlay we could afford, acoustic panelling in the rooms to absorb sound, black out curtains,' Glenys says. 'This is a win-win situation for everybody,' she says. 'I can't see a downside of this. The hospital will have its rooms back. The girls who had nowhere to go, now have a home.' Watch Re: News' investigation now on TVNZ+. Support networks for ME/CFS: Associated New Zealand ME Society (ANZMES) provides support and distributes information to groups and individuals suffering from or interested in ME/CFS including their families and carers. ME RESPITE is a registered charity providing practical support to those with Myalgic Encephalomyelitis (ME) Chronic Fatigue Syndrome (CFS) and related illnesses.
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
Press Release – ANZMES 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. 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.
