For about six months, Tauranga father Will Devery has been “confined” to his bedroom.
The 36-year-old eats his meals in bed, uses a walker to go to the bathroom and has his blinds drawn to block the sunlight.
He left the house for the first time in “months” to go to the cinema a couple of weeks ago, but said “it killed me”.
Will said he was diagnosed with chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), in 2021.
The former band member said his condition meant he had to give up playing shows and socialising, and had to defer the final year of his three-year counselling degree.
The hardest part was seeing everyone “moving forward with their lives, but I’m stuck here”.
Will and his wife, Hannah Devery, spoke to the Bay of Plenty Times ahead of Severe ME Day today.
About 65,000 New Zealanders are affected by ME/CFS, with about 25% being housebound or bedbound and some requiring 24/7 care, according to Complex Chronic Illness Support.
Severe ME is a multi-systemic neurological illness that can leave individuals unable to tolerate light, sound, or touch.
It can rob them of the ability to speak, eat, or perform any basic self-care, the Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) said.
Will first started experiencing symptoms about 15 years ago when he was “almost falling asleep at work”.
Before his diagnosis, Will was “pretty healthy” – he walked the dog daily, played sports and was a member of the Pāpāmoa Surf Life Saving Club.
His symptoms got “way worse” in 2020 when the couple was living in Wales and Will, then working as a teacher aide, got Covid-19.
He became constantly exhausted “for no reason”.
The couple moved back to Tauranga with their newborn son in 2021 and Will was a stay-at-home dad for two years.
A doctor diagnosed him with CFS, but then retired.
“After that … we couldn’t find anyone.”
This led Will to go private, which was expensive and had mixed results – one person was great, but another lacked the expertise Will needed.
Will began his counselling degree in 2023. He would go to Bethlehem Tertiary Institute and then home to bed.
In February this year, Hannah said Will “ended up in bed and didn’t get out”.
Since then, he had “constant fatigue”, pain and exhaustion.
“I feel like I’ve just woken up, but like all day.”
Adjusting his weighted blanket or getting out of bed was “too much”.
“I’m confined to my room.”
Hannah, a teacher doing a master’s degree this year, said Will had recently been approved for a “life-changing” carer for 13 hours per week.
It was funded through Health NZ’s Support Net but took Will falling “off the cliff” to become eligible, Hannah said.
They were also supported by family, friends and their son’s daycare.
Will said he would like to see more pre-emptive support for chronic illness, while Hannah would like a CFS specialist to be present in every city.
ANZMES has called on the Government to address “the systemic neglect” of New Zealanders with ME.
“Despite the severity and scale of the crisis, these individuals remain largely invisible, trapped within their homes and failed by a healthcare system ill-equipped to meet their needs,” a statement said.
Association president Fiona Charlton said their suffering was “compounded by a healthcare system that lacks the necessary expertise and facilities”.
ANZMES called on policymakers to establish dedicated funding for respite and long-term residential care facilities staffed by ME specialists, mandate ME/CFS education for healthcare professionals, and include ME/CFS in all national disability support policies and frameworks.
Complex Chronic Illness Support chief executive Miranda Whitwell said the illness impacted “entire families”, with parents giving up work to care fulltime for adult children.
Whitwell said it was supporting 807 people. It provided frozen meals, one-to-one assistance, support groups and workshops.
Health New Zealand Hauora a Toi Bay of Plenty operations group director Pauline McGrath said it acknowledged the serious, long-term impact of ME/CFS.
Patients were generally cared for “in the same way” as people with other chronic conditions, she said.
As ME/CFS could present with a variety of symptoms, the healthcare required would vary between patients. This was best managed in primary care but GPs could refer patients to specialists when required, McGrath said.
In the Bay of Plenty, people with ME/CFS were considered for help under a pathway for people with conditions likely to last more than six months and with “very high needs”.
Support Net services included personal care, home help and respite to give carers a break, she said.
Patients who felt they were not receiving adequate healthcare could file a complaint with the Health and Disability Commissioner.
Megan Wilson is a health and general news reporter for the Bay of Plenty Times and Rotorua Daily Post. She has been a journalist since 2021.