An estimated 2500 Bay of Plenty locals are living with Myalgic Encephalomyelitis (ME also known as Chronic Fatigue Syndrome) and another 6400 are suffering from long Covid, most of whom are undiagnosed and struggling to cope on their own.

Today is international ME Awareness Day, which draws attention to the “missing millions” who effectively disappear from society every year as their conditions force them to become housebound and withdraw from employment and social activities.

Pāpāmoa business owner Kirsty Harwood was enjoying the trip of a lifetime in late 2023 when she started experiencing viral illness symptoms and pain in her feet and legs.

After returning to New Zealand, life came to a sudden halt. Although further testing is still being done, doctors believe she has chronic fatigue syndrome.

“I had to give up hiking, snowboarding, dancing and wasn’t able to do anything anymore,” she recalled.

“I had difficulty concentrating and making decisions. I couldn’t think straight. It was a struggle to attend meetings or sit at a computer, and I had horrible nervy sensations through my body, and aches and pains.”

She sought help from various medical professionals and natural health therapists and was eventually referred to Complex Chronic Illness Support Inc (known as CCI Support).

“They had a wealth of resources and helped me sift through all the well-meaning advice to focus on what was important – rest, learning how to breathe, slowing down and putting a manageable plan in place.

“It was quite a shock mentally, and it’s easy to feel sorry for yourself. But I’ve learned to find grace and accept it, and I’ve made a lot of progress. I would encourage anyone to join up with CCI Support straight away. It’s been a big help.”

Kirsty Harwood in front of the Santiago de Compostela Cathedral. Photo / Supplied

CCI Support has just received a much-needed $10,000 grant from BayTrust towards its annual operating costs.

The charity is based in Tauranga but supports 900 people nationwide by providing hope, understanding and practical tools to help people cope with conditions such as ME/CFS, fibromyalgia, and long Covid.

CCI Support CEO Miranda Whitwell said many people were undiagnosed because there is no single test that can confirm these conditions.

Instead, it’s a process of elimination.

“We still have to fight against the belief these are psychological and not physical conditions, and that it’s all in someone’s head,” she said.

“Not only do people struggle to figure out why their body’s not working right, but they also struggle with people believing them, and coming to terms with the fact there may be no cure.”

Symptoms can include deep fatigue, brain fog, musculoskeletal pain, dizziness and post-exertional malaise (where symptoms get worse after physical or mental effort).

Some people with fibromyalgia can also be sensitive to touch or temperature.

“The severity can vary widely –from moderate symptoms that limit daily activities, to severe cases where individuals are bedbound and need full-time care,” Whitwell said.

“Our work focuses on providing support, validation, and resources to help those affected lead the best life possible.”

Conditions such as ME/CFS and fibromyalgia have been recorded for hundreds of years.

The founder of modern nursing, Florence Nightingale, is believed to have suffered from fibromyalgia, which is why international ME Awareness Day is held every year on her birthday.

Whitwell said CCI Support is very grateful for BayTrust’s recent grant.

“The importance of BayTrust’s contribution in enabling CCI Support to continue its vital work in the community is hard to measure in monetary terms but the increased sense of wellbeing and community speaks volumes.

“This grant helps us keep the doors open and lights on. From basic day-to-day expenses of running a charity to funding staff salaries, maintaining support programmes, or enhancing outreach efforts. Every dollar goes further when it’s donated to charities like ours.”

BayTrust CEO Alastair Rhodes said help from organisations such as CCI Support makes a real difference.

“It helps people and their whānau cope better, reduces long-term reliance on benefits, and leads to healthier, more connected communities. With more resourcing, they could extend that life-changing support much further.

“BayTrust is proud to help support the important work that they do, and strongly encourages other organisations, businesses and individual donors to get involved to help CCI Support keep up with the growing demand for their services.”

-Jo-Marie Baker is a freelance writer in the Bay of Plenty.