‘I feel trapped’: 29-year-old Wellington woman hasn’t left upstairs bedroom for four months

Wednesday, 8 July 2026

Elvira Edmonds has been mostly bed-bound for a year and has not left her upstairs bedroom for more than four months.

The 29-year-old has ME/chronic fatigue syndrome, a complex neurological illness that can affect the brain, muscles, heart and multiple body systems, with no known cure.

An estimated 65,000 New Zealanders are living with the disease, with around a quarter housebound or bedridden.

Advocates want it recognised as a disability, saying it would improve access to funded home support, respite care and long-term services.

A 29-year old woman from Wellington has not left her upstairs bedroom for more than four months because of a debilitating illness.

Elvira Edmonds relies on her flatmates to bring her water and frozen meals which she microwaves in her room because she’s unable to walk downstairs to the kitchen on her own. She has an en-suite and is able to use the bathroom on her own.

“I feel like Rapunzel,” says Edmonds, referring to the fairy tale character who lived locked in a tower. “I feel trapped, like I am stuck in my own body.”

Edmonds has myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome - however chronic fatigue is only one of the symptoms.

She has been living with the disease for three years. At first her symptoms were mild. But now, her extreme fatigue, dizziness and nausea, brain fog, body pain and flu-like symptoms have left her mostly bedbound for the past year.

“I have recently been able to sit by my window and read with an outside breeze, which has been amazing. But I do really hope I’m going to be able to walk outside again,” she says.

What is ME?

ME is a complex neurological disease that can impact the brain, muscles and heart and the immune, nervous and digestive systems.

In severe cases, it can stop you from being able to move, eat or even speak, and exposure to light, sound or touch can cause intense pain.

A hallmark symptom is post-exertional malaise, where too much physical or mental exertion triggers severe symptoms.

“Basically you do too much and you get consequences,” Edmonds says. “When you get post-exertional malaise, it can make you permanently worse. ME doesn't take away any desire to do things, it just removes the capacity.”

There is no cure for ME and its exact cause is unknown. But it can be triggered by an attack on the immune system, such as a virus.

The national advisory board, Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES), estimates 65,000 Kiwis have ME. And about a quarter of them are housebound or bedridden, with many requiring 24/7 care.

Despite this, ME is not recognised as a disability.

‘Postcode lottery’

As someone whose life is completely “on pause” because of ME, Edmonds says it is “ridiculous” it is not considered a disability in New Zealand.

“It's one of the most disabling disabilities that there is,” she says.

ANZMES president Fiona Charlton is calling for the Government to recognise ME as a disability.

She says this would allow patients to access services that are available to those with recognised disabilities, such as funded home care, respite care and tailored long‑term care plans.

Currently, some people with ME can be eligible for up to three hours of funded care a day. But for those with severe cases, who need help with going to the toilet and feeding, this is not enough, Charlton says.

“Right now, people with ME face a postcode lottery: some receive basic support, others are turned away entirely and those with severe ME are often left with only a few hours of care a day, despite needing 24‑hour assistance.

“Disability recognition would end that inequity and give people consistent access to… services based on the reality of their condition, not outdated assumptions,” Charlton says.

Charlton says there is also an urgent need for a more informed health workforce as ME has been historically misunderstood.

“This leads to misdiagnosis, delayed diagnosis and people deteriorating unnecessarily.”

Charlton says the establishment of national guidelines based on international best practice would ensure every clinician, in every region, is working to the same standard.

The Ministry of Health told Stuff that patients with ME are cared for in the same way as people with other chronic conditions.

“Because ME/chronic fatigue syndrome can present with a wide variety of symptoms, the healthcare required will vary from patient to patient. This is best managed with an individual’s primary care provider, but they can be referred to specialist care when required. This decision would sit with the GP.”

It says there is no single government policy that classifies specific medical conditions as disabilities.

“Various disabilities and health conditions are eligible for different services and supports provided by the health system and disability support system.

“People with ME/chronic fatigue syndrome may be considered for Health NZ support services as part of their Long-Term Chronic Health Conditions pathway. This is for people who have a long-term condition that is likely to last for more than six months and who have very high needs.”

It recommends patients get a needs assessment services co-ordination to assess an individual’s needs and the support services they may access.

This piece of editorial is part of the Paddy Gower Does Stuff health series, brought to you by Chemist Warehouse. Stay tuned for other episodes, releasing each week on Stuff. Check out more great stories and videos from Paddy here.