Chronic fatigue syndrome: Bay of Plenty mother quits job to care for teen daughter

Life is a “heartbreak” for teenager Rachel Miller and her mum. Rachel just wants to be like her friends – going to school, heading off to university, getting a job and looking after herself. But she can’t and now her mum has quit work to be her full-time carer. Megan Wilson examines what life is like living with debilitating chronic fatigue and what’s being done to better support people such as Rachel.

A Bay of Plenty mother has quit her job to become a full-time carer for her 17-year-old daughter living with an “invisible illness”.

Rebecca Miller’s daughter, Rachel Miller, was diagnosed with moderate to severe myalgic encephalomyelitis (ME) – also known as chronic fatigue syndrome (CFS) – two years ago.

Rebecca said Rachel’s condition was a “heartbreak” for the Te Puke family and meant Rachel missed out on milestones such as graduating from high school, attending the school ball, going to university and getting a job.

She is sharing her daughter’s story to raise awareness about ME, including what the condition looks like and how to support someone with it.

At least 25,000 people – one in 250 adults and one in 134 youth – are estimated to have ME in New Zealand, according to the Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES).

ME is characterised by profound exhaustion, problems with concentration and short-term memory, non-refreshing sleep and the inability to exercise. There is no treatment.

Last year, the society presented a petition urging the Government to reclassify ME/CFS from a chronic illness to a disability.

Parliament’s health committee this year agreed ME is a disability and is encouraging Whaikaha – Ministry of Disabled People to consider amending its eligibility criteria so people living with the condition could access ministry-funded disability support services.

The ministry says policy work has started and updates will be provided.

Rebecca Miller has had to quit her job to look after her 17-year-old daughter who is living with chronic fatigue. Photo / Alex Cairns

Living with ME

Sitting across from her at the dining table, Rachel looks and speaks like a regular, high-functioning teenager. She doesn’t exhibit any typical signs of tiredness or have trouble getting through a 20-minute conversation.

It is why her mother calls it an “invisible illness”.

Rachel says having ME “really holds me back a lot”.

She left school at 16 and tried alternative learning methods – distance and in-person – but neither was compatible with her condition.

“A lot of the time, I’ll spend all day in bed and I’ll have to have Mum get my food and do almost everything for me.”

Meanwhile, her friends are graduating and going to university.

“It’s really sad to look at everyone around me and see how they’re progressing.

“I want to have a job, I want to be able to look after myself ... but I can’t. It gives me no purpose ... I feel like I don’t have anything to do.”

Rachel says she feels guilty that her mother has to do everything for her.

“Not that [she’s] going to die any time soon, but when I get to that age, I don’t really know what I’m going to do then.”

Rebecca Miller says a "good day" for Rachel is sitting with her family to have dinner, watch TV or have a conversation. Photo / Alex Cairns

The impact on her family

Rebecca says Rachel got sick at age 10 and was subsequently diagnosed with post-viral fatigue. Since then, Rachel got sick “a lot more” than other children.

At high school, her attendance dropped, and “she just couldn’t get out of bed more often than she could”.

“When she got diagnosed, it all made sense. That she was just at complete exhaustion most of the time. And her normal was basically our having flu.”

Rebecca says Rachel experienced stomach pains, nausea, headaches, brain fog and dizziness. Having ME also means she has an “upside-down body clock”.

“She gets very unrefreshed sleep. Even if she does sleep all night ... it’s like she hasn’t slept at all. And she can’t even get out of bed if she tries.”

“A really good day” for Rachel is attending two appointments and tidying her room.

“A bad day – she’s in her room and she will struggle to get up. She will get to the toilet, get to the shower and that’s about all she can manage. And that could be for weeks. That could be for a day.”

Rebecca Miller has created a poster to raise awareness for "invisible" disabilities. Photo / Alex Cairns

Rebecca quit her job as a chef to become Rachel’s carer and says it has been “very difficult” going from two incomes to one.

“First of all, it’s grief, because you look back at the videos and the photos and the achievements before she was 10 and all the things she was doing.

“And then, you see how much she struggles just with small things now. It’s kind of a bit of a heartbreak that the whole family goes through.”

Rebecca is hopeful there will be a treatment. She plans to start a support group in Te Puke for parents of children and teenagers with chronic illnesses and to visit schools in the Te Puke area with information about ME.

How does ME begin?

Myalgic Encephalomyelitis Society former president and committee member Heather Wilson says ME typically starts with getting a virus, such as glandular fever or Covid-19.

“People have got to have un-remedying fatigue for about six months – most of them get post-exertional stress which, if you do something physical or a big mental thing, the following day they can be absolutely exhausted and hardly get out of bed.”

There is no cure but eating regularly with “plenty of variety” and “pacing yourself” – resting before going out – helps.

She says sleep disorders can be treated with “non-habit-forming medications”.

The society presented a petition to Parliament on September 2, 2022, urging the Government to reclassify the condition from a chronic illness to a disability.

Wilson says it would make a “huge difference” because the only funding for chronic illnesses is through hospitals, which means there is a “very high threshold” to get help.

The petition, which had 6444 signatures, said people with the condition faced barriers to support under the chronic illness classification.

“We believe that reclassification will lead to real improvements for those in need, providing access to much-needed home help, housing support, financial support, and counselling,” the petition said.

The health select committee presented its report to Parliament on August 17, saying it understood ME/CFS met the Government’s definition of a disability.

“We therefore encourage Whaikaha to consider amending its eligibility criteria to enable people with ME/CFS to access Whaikaha-funded disability support services,” the report said.

Amanda Bleckmann, the ministry’s commissioning, design and delivery deputy chief executive, said it acknowledged the committee’s response and policy work had started on eligibility for funded disability support services.

The policy work was in the “scoping” stage and would consider those who may have unmet needs and what support they may need. It did not have a specific date for when the work would finish but updates would be provided to the minister.

Bleckmann said the funding and delivery of support services for disabled people was shared across several government agencies, all of which must ensure their policies and services “support the full participation of disabled people in our society”.

Te Whatu Ora commissioning national director Allan Moffitt said most people with ME/CFS were managed within primary care settings by GPs and wraparound teams. This included health improvement or wellness practitioners, occupational therapists, physiotherapists, psychologists, health coaches, social support services and Needs Assessment Service Co-ordination agencies.

A “wellness-based integrated community approach” was the best solution. “The main treatment principle is a good wraparound team addressing needs and supporting staged reintegration into normal activities, not overdoing it, while expecting lots of ups and downs.”

Asked what training health professionals undergo for ME/CFS, Moffitt said GPs received “some training” so would have a basic knowledge.

GP trainees were exposed to these conditions in their attachments and learned from their GP teachers and reading about the needs of ME/CFS patients.

ME/CFS was part of neurology specialist training but focused more on diagnosis rather than ongoing management, Moffitt said.

What is ME/CFS?

ME/CFS is often triggered by a viral illness and involves overwhelming fatigue and other symptoms that range in severity as it affects many body systems, such as the immune, neuroendocrine and autonomic nervous systems.

The key characteristic of ME/CFS is post-exertional malaise which presents 12-48 hours after exertion and can result in days to weeks of exacerbated symptoms. For the very severely affected, this exertion can be simply trying to speak or eat.

Source: ANZMES

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.