Local Focus: May is ME/CFS awareness month, so what is it?

While May has been significant for all sorts of Covid related reasons, for one group of New Zealanders, May is a time to campaign and raise awareness of an often crippling illness.

May is International ME/CFS Awareness Month. ME campaigners like Elizabeth McGougan, see this as the perfect opportunity to remind people that while the country experienced being home-bound for four weeks, people with ME experience this almost every day of their lives.

"Living in level 3 is how we normally live," McGougan said.

"It just might give people a little idea of how complicated and difficult it is living with this illness. The fact is we would love to leave our home and do all these great things, but we can't because our bodies don't let us."

The impacts and cause of ME, also known as Chronic Fatigue Syndrome, remains relatively unknown. Yet up to 20,000 Kiwis are diagnosed with it.

"For me, it is constant tiredness, constant lethargy," Barb Edwards, an ME patient living in Tauranga said.

"I've never been an energetic person, my entire life. I've always struggled with exercise, I've struggled with doing things that 'normal people' do all the time, because I just do not have the energy to do them."

"My life has been flipped upside down," said ex-cakemaker Mandy Dawes.

"Things that I used to be able to do, I couldn't do. I've felt like a hypochondriac, that all these things were going wrong for me and still do. Every time you think you're on top of things, they come along and wipe you back out again.

"Life is just really different."

Ebony Whitaker also has ME. He lives in Ōhope Beach running a landscape photography business.

"The way I like to describe it, the way most people can relate to who haven't actually had ME, is if they've had fatigue from another illness, such as the flu," Whitaker said.

"You just are physically unable, it's an incredible challenge in order to do tasks. But also mentally too, it can be just as debilitating."

"Chronic Illness Support was actually started in Te Puke," McGougan said.

"We are one of the oldest charities in New Zealand and Australia who support people with ME. I have members all through the Eastern Bay, all the way through the Western Bay, all the way into Rotorua and Taupō.

"This condition is not just for people in big cities, there's a lot of rural people who live with it as well.

"It is a real local condition for us and when I became unwell, I came home - I came back to my whānau and back to where I live, that was a really important part of healing for me."

The campaign is to help ME patients, like McGougan, access health-care which isn't funded by the Government. There's also a Givealittle page, for people to donate.

"For a lot of people, it's a barrier," Whitaker said.

"They will continue to go see a doctor who isn't a good fit for them because they can't afford to change doctors. So the campaign is about raising funds for people who are in that position."

"It's a bit like coming out of this lockdown and expecting life to be the same as it was before," Edwards said.

"Once you've got ME, you're on a different course. It's no good harking back all the time at what you used to be able to do and what life used to be like."

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