ME and CFS Awareness Day: Hawke’s Bay chronic fatigue sufferers call for recognition

Tū Pakari - Stand Together chairwoman Natalie Snoad (left) and committee member Terelle McLean are calling for people to recognise the severity of ME/CFS. Photo / Warren Buckland

For about 25,000 Kiwis living with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), often the most basic life tasks can be a gruelling nightmare.

The disease is characterised by excessive fatigue, sleep abnormalities, pain and other symptoms that are made significantly worse by exertion.

But those suffering are often branded as “lazy” or told that it is “all in their head” by those who don’t understand the condition.

Ahead of ME/CFS Awareness Day on Sunday, May 12, Mitchell Hageman hears from two Hawke’s Bay sufferers about the importance of raising awareness of a disability not officially recognised as such.

Hawke’s Bay woman Natalie Snoad, 32, admits she was a self-professed “horse girl” before the devastating grip of chronic fatigue took hold.

Now, she struggles to complete some of the most basic life tasks, let alone spend time with the horses she loves.

Officially diagnosed with CFS in 2021, it was complications from back surgery in 2018 that started Snoad’s ME journey.

“Usually, it’s something that happens after you’ve had a virus. For me, it was a bit different.”

Things were “never the same” for Snoad after surgery, with the condition impacting her personal and professional life in the years following.

She initially wrote off her fatigue as her being worn down after the surgery, but as the years passed and her back healed, the severity of the fatigue-related symptoms worsened, and Snoad knew something was seriously wrong.

“I had to quit work because after an hour of looking at a screen, my eyes would blur, and I would get extremely dizzy and nauseous.”

When she could return to part-time work, it “completely wiped her out.”

After a visit to her GP, she was told of her chronic fatigue and fibromyalgia diagnosis.

“I’ve been slowly learning my new lifestyle. I used to be a horse girl, living out in the country and being quite active, and now I can barely walk around my block.”

People living with ME/CFS are often on a scale of functionality, ranging from those who have very severe symptoms and are often limited to their rooms/beds or no longer able to work or be active within their communities. Some can still maintain part-time or even fulltime employment.

However, Snoad said this often comes at a cost, in which people’s lives revolve around working and resting. There is no full cure, and treatment is only done via long-term management of the symptoms.

“The best practice for treatment for CFS is learning to pace yourself so you don’t exhaust yourself,” Snoad said.

Tū Pakari - Stand Together chairwoman Natalie Snoad (left) and committee member Terelle McLean are calling for people to recognise the severity of ME/CFS. Photo / Warren Buckland

Recognition and the health system

According to Complex Chronic Illness Support NZ, ME/CFS is not recognised as a disability in New Zealand or funded for extra support within the health system.

“We’d love to see it classed as a disability, because it is hugely disabling. It’s not just physical; it’s mental as well, dealing with brain fog and similar things,” Snoad said.

“It’s still very much in the public opinion that it’s in our heads, or we are just lazy, or it’s mental illness.”

The Ministry of Health did not have a specific statement regarding its position on chronic fatigue syndrome, but a spokesperson said it recognised the serious, long-term impact it could have on people’s lives.

“Diagnosing chronic fatigue syndrome is complex, and there is currently no consensus agreement amongst medical professionals as to how it should be definitively diagnosed.”

The spokesperson said despite the condition not officially being classed as a disability, there would always be access to care for those who require help managing symptoms.

“It is important to note that regardless of how a condition is classified, access to care remains available to those who need it.

“Similar to other chronic conditions, myalgic encephalomyelitis/chronic fatigue syndrome is best managed through general practice, which can refer people on to specialist care if required.”

Also a post-viral condition, Long Covid has continued to shed more light on ME/CFS, and a number of studies have also been conducted within the health system.

“Long Covid is basically a sibling to chronic fatigue syndrome,” Snoad said.

“With the amount of research put in, there will definitely be links to help ME/CFS sufferers as well. Evidence shows treatment options are the same, and ones that aren’t suitable for ME/CFS aren’t suitable for Long Covid either.”

Finding a voice

ME/CFS doesn’t discriminate when it comes to age. Terelle McLean, who was diagnosed in her early 20s, said everyone from young children to the elderly can be impacted.

“I was diagnosed in 2019. I was living in Wellington and doing everything like a normal 20-year-old.

“Then I got sick, and suddenly, I had to crawl up the stairs of my own home.”

She said the condition makes it harder for people to make their voices heard.

“If you don’t have it or know someone who lives with it, it’s hard to understand.

“If we were just lazy, we’d be enjoying it. You have ambitions like everyone else.”

McLean said since her diagnosis, she had been trying hard to navigate her illness.

“A big thing personally is prioritising. It means I’ve had to make sacrifices.”

She said a big source of support is the Tū Pakari - Stand Together support group, which offers a community for Hawke’s Bay residents living with energy-limiting and chronic pain conditions.

Snoad, who is also the chairwoman of Tū Pakari, encouraged anyone struggling to reach out.

“There’s more than just ME/CFS sufferers that have energy-limiting pain issues. We want to be able to help everyone going through that life change,” Snoad said.

Tū Pakari can be contacted via info@mecfshb.onmicrosoft.com.

Mitchell Hageman joined Hawke’s Bay Today in January 2023. From his Napier base, he writes regularly on social issues, arts and culture, and the community.