Chronic fatigue syndrome: 'I lost my thirties to this illness'

Dewi Preece
Source: 1News

Experts are warning of an increase in people suffering from chronic fatigue syndrome as a result of long-Covid.

45,000 people in New Zealand live with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).

It's an umbrella term that covers a variety of post-viral illnesses.

It manifests after the body fights off an infection like glandular fever, and can range from mild symptoms with minimal impact on day-to-day tasks, to being bed-bound and in need of round-the-clock care.

Fiona Charlton says she "lost her thirties to the illness."

She was still practising law when the symptoms worsened in her twenties.

"I'd forget what I was saying in the middle of a sentence, and even when they prompt me it would just be gone. And it would just distress me because I want to provide a professional service, and I was struggling."

She's now housebound and has the cognitive and physical capacity to put in a few productive hours every day. But now and then, she relapses to a much worse condition.

"May through to July [this year] I was bed-bound. It was the most severe I've been in over a decade. I was essentially bed-bound the entire time and when I tried to get up, I would lose consciousness."

She advocates for other sufferers as president of the Associated New Zealand ME Society (ANZMES) where she hears stories around the country.

"Some of them require tube feeding because they can't eat on their own. So it's extremely disabling."

But it's not a disability, according to the New Zealand government.

Instead, it's classified as a long-term chronic illness, similar to diabetes.

Warren Tate at the University of Otago is one of the world's leading researchers in the field and says the current classification isn't accurate.

"Most people with diabetes can work full-time, they can earn money, they can interact with society, they can live relatively normal lives. ME/CFS is not like that. From the day of onset, people are severely debilitated."

He also has a personal connection to the illness, with two family members living with ME/CFS, including his daughter who contracted it in her teens after glandular fever.

"She went from being a vibrant teenager to not being able to walk for more than about 5-10 metres. she could walk to get to the shower, sit down have a shower and come back it would take about three hours to recover from that."

He recently made the connection between ME/CFS and long-Covid and says it could mean thousands more cases in New Zealand in the coming years.

"What I've tried to do now is develop a holistic model for the illness, which is also relevant to long-covid, because long-covid is really a kind of example of ME/CFS type illness, and we've shown that in the research lab."

He says a conservative estimate would be that 10% of people who develop long-Covid would fit the definition of having ME/CFS, which would equate to roughly 20,000 people in New Zealand.

"I'm optimistic that it will be possible to find a way of reversing it, how long it'll take I don't know. But with long-Covid coming in, and so much more interest and money going into research, we're in quite a good phase."

Fiona's also optimistic about the research led by Warren Tate in Dunedin, but she's chasing a more immediate goal.

Through ANZMES she's filed a petition with the government, which was read in the house last week, to re-classify ME/CFS as a disability, and not a chronic illness.

Doing so would allow patients to access more resources and support services.

"We've been advocating for over 40 years now. 42 years. So we've asked for reclassification every year. We see the devastated lives, and the impact it's had on families, where family members have had to give up jobs to care for someone with ME."

The most severe cases of ME/CFS, which make up about 25% of cases in New Zealand, have access to various levels of support, but the roughly 60% of cases who fit the moderate-to-severe category, like Fiona, aren't eligible for the same care.

"We also need help and support a few days a week. We just don't have access currently, and that's what we're fighting for."

Minister Poto Williams told 1News in a statement that their report has been received, and now sits with the newly set up Ministry of Disability Issues, Whaikaha.

She says, "Whaikaha is responsible for the delivery and transformation of most Disability Support Services (DSS), previously funded through the Ministry of Health. The recent appointment of a permanent Chief Executive will Whaikaha to develop and progress a long-term cross-government policy work programme, which will tackle key issues such as eligibility for DSS. The timeframe for this is still to be determined and any changes to eligibility will require additional investment."