Gillian Watson was diagnosed with chronic fatigue syndrome in 2017. The debilitating disorder has had a profound impact on her life.

An estimated 16,000 to 20,000 people in New Zealand have chronic fatigue syndrome. Despite this, the debilitating condition remains poorly understood. OLIVER LEWIS reports.

Gillian Watson calls it the year she forgot.

The Christchurch woman was struck down with flu in the latter half of 2015 and never really recovered. She didn't know it at the time, but looking back she thinks the illness was the trigger for her chronic fatigue syndrome.

By 2016, she had left her job, exercise made her feel worse, and she was sleeping more and more. An eloquent, well-educated woman, Watson went from dealing with complicated math to struggling to balance her household budget. She was living in a haze.

"It doesn't exist for me," she says of 2016. As well as the cognitive and energy issues associated with chronic fatigue syndrome, she was also living with sleep apnoea, a serious sleep disorder. "It was like white noise. I was living with white noise, constantly."

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Some of her symptoms have only got worse since. For most people checking the letterbox is a minor chore, but when Watson walks there and back it might take three hours to recover. There are shelves of books throughout her Christchurch home, but she no longer reads. "I can't hold the memory long enough to follow the story," Watson says.

Walking is difficult, talking can be difficult, and she is mostly housebound. "I've come to accept I'm not going to ever be the person I used to be – I think – but I haven't yet learned how to be productive.

"Because productiveness is a massive part of society and I can't think anymore, I can't walk anymore. That's why I wanted to do this [story], because at least this is a way I can give back, by raising awareness."

JOSEPH JOHNSON/STUFF Gillian Watson's chronic fatigue syndrome means she is sensitive to light, so she keeps the shutters closed and the room in shadow.

Watson warns us before the interview the exertion of talking will take a toll. By the time it comes to an end, she is struggling to speak. The words are like weights being dredged up through deep water.

As she walks into the kitchen, the 44-year-old braces herself against the bench and stares at her feet, each step painfully slow and considered. As we leave, she is sitting on the bed.

Earlier in the interview, she had said: "I'll sleep for two days after this, easy."

Chronic fatigue syndrome, also called myalgic encephalomyelitis (ME), is characterised by severe, disabling fatigue that doesn't go away with rest. Other symptoms include impaired concentration, sensitivity to light and noise and muscle pain. While there are theories, the cause of the complex illness is not yet understood. It is usually triggered by a viral infection, but other factors can also be triggers.

For a long time, the condition wasn't taken seriously by mainstream medicine. Sufferers were dismissed and told the symptoms were in their head. But that is all changing. Researchers have identified significant differences between people with chronic fatigue syndrome and control groups, including changes in immune function and energy production. Work is also underway developing a blood-based test to diagnose the disease.

Getting a diagnosis was a long, frustrating process for Watson.

"I literally had the words 'it's all in your head' from a neurologist," she says. "He looked at my history, saw that I had a history of depression, put his pencil down and stopped taking notes."

JOSEPH JOHNSON/STUFF Watson used to be an avid reader, but no longer has the memory to enjoy books.

Before she was struck down with the flu, Watson regularly walked around Hagley Park and went swimming during lunch breaks. Afterwards, she started to find exercise made her feel worse, not better. She was also sleeping more, up to 12 hours a night and napping for two to four hours a day.

When she went to her GP he put it down to depression, Watson says. It wasn't until 2017 when she was diagnosed with chronic fatigue syndrome. Watson is critical of the lack of understanding from medical professionals, and says in her case it has been damaging.

What helps is pacing. People with chronic fatigue syndrome learn to live within their energy envelope, Watson says. If they don't, they crash, causing a flare up in symptoms. "Basically for most of 2017, I kept crashing. I'd push and crash, push and crash," Watson says.

Post-exertional malaise is a key feature of chronic fatigue syndrome. The term refers to the worsening of symptoms following even minor physical, social or mental exertion. It might be 12 to 48 hours after the activity when that happens, but it can last for prolonged periods. The goal is to avoid flare ups by balancing rest and activity.

JOSEPH JOHNSON/STUFF Watson has difficulty walking and even talking due to her chronic fatigue syndrome.

"I've learned that I have very small windows," Watson says.

"Chronic fatigue syndrome isn't necessarily a degenerative disease but it can be if you keep pushing. I believe I wouldn't necessarily have the degree of difficulty with speaking and mobility issues today if I'd got that message much sooner."

The shutters are drawn in her house, blocking out the light and casting the room in shadow. Watson is sensitive to light and noise.

Sitting in on the interview is Anna Grenfell, a registered nurse and community facilitator for ME/CFS Group Canterbury, a support group which has about 60 members with chronic fatigue syndrome.

Grenfell regularly visits people with acute chronic fatigue syndrome symptoms and is available to help other members with things like applying for assistance through Work and Income. Watson lives alone with her two dogs Ludo and Gambit, and needs home support help. She gets assistance showering and with household chores, and uses a powered-wheelchair when she goes outside.

The condition has been profoundly debilitating. Watson finds places like the supermarket overwhelming, and her social life has suffered. "I'm trying to balance the realism of 'this is a long-term illness, people live with this for decades', versus trying to be positive, that people do recover, but it's 5 per cent," she says.

The support group has members with chronic fatigue syndrome who are teenagers through to people in their 80s. There is also a spectrum of severity, Grenfell says. Some people work part-time, while others have children or other responsibilities.

JOSEPH JOHNSON/STUFF Watson lives with her two dogs, Ludo and Gambit.

Grenfell is hopeful recent changes to Canterbury District Health Board's HealthPathways system for chronic fatigue syndrome will provide better information for GPs and patients.

HealthPathways is the main source of assessment, management and referral information about health services for GP teams. Until recently it had been recommending graded exercise therapy, which involves slowly building up physical activity, and cognitive behavioural therapy for chronic fatigue syndrome.

Both treatments have been removed as they are no longer recommended, CDHB planning, funding and decision support executive director Carolyn Gullery says.

One expert with a personal connection to chronic fatigue syndrome is University of Otago biochemistry professor Warren Tate. His daughter has been living with the condition for about 30 years; she got it aged 14 after a bout of glandular fever. She went from a vibrant, social teenager to someone who needed to rest for three or four hours after getting from the bed to the shower, Tate says.

"Many patients are like that. They are vibrant, active, energetic human beings and suddenly they get hit and their life changes. To be told it's a psychiatric illness, it's insulting really."

Tate has been studying chronic fatigue syndrome at a molecular level since 2010, conducting a series of precision medicine studies comparing people with the condition to a control group. His research has found significant differences between those with and without the condition, including immune system and energy production changes. "There is a biological basis to the illness," Tate says.

JOSEPH JOHNSON/STUFF ME/CFS Group Canterbury community facilitator Anna Grenfell regularly visits Watson at her Christchurch home.

A small proportion of people who develop chronic fatigue syndrome fully recover, however Tate says it is considered a long-term condition that people have to manage. Those with severe, debilitating symptoms might stay in an acute phase for several years, he says, before slowly improving to the point they could do limited amounts of activity.

Researchers are increasingly studying the condition, promising greater understanding for medical professionals and patients. There are major research programmes underway in the United States, Tate says, and growing interest.

"Mainstream researchers are now moving into this area whereas no one would touch it before."