Thousands of Bay of Plenty residents will suffer from a complex chronic illness at some point in their lives – many of whom will never receive a diagnosis or support.

Instead, they will retreat to their beds and struggle to leave their homes. Around half end up quitting their jobs. Some will recover within months, while others have to adjust to a new normal and may never make a full recovery.

Complex Chronic Illness Support Inc (CCI Support) is a charity that began in Tauranga in 1981 before expanding nationwide. They currently support around 900 members (260 of whom live in the Bay of Plenty) to cope with Myalgic Encephalomyelitis (ME) – also known as Chronic Fatigue Syndrome (CFS) – as well as fibromyalgia, and long COVID.

These real, serious and often misunderstood conditions can have a range of different symptoms which affect the body’s neurological, immune and energy systems. People suffer extreme fatigue, brain fog, pain, dizziness and more, and any physical or mental exertion can make them feel worse. Fibromyalgia sufferers 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,” explains CCI Support CEO Miranda Whitwell.

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

Fighting To Be Seen

Miranda says many people are never officially diagnosed because there’s no single test that can confirm these conditions. Rather, 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 says. “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.

Emeritus Professor Warren Tate, a globally recognised researcher on ME/CFS, has noted: “These conditions are debilitating and biologically rooted, not psychological. They impact thousands of New Zealanders who desperately need better understanding and support.”

People who suffer from these chronic conditions are often referred to as the ‘missing millions’ because they simply disappear from their own lives – missing work, school, social activities and family life – because of their illness. They are also often invisible to the wider public and health systems.

Helping Hand

CCI Support employs Health & Wellness Facilitators around the country to provide a range of workshops and programmes, in addition to personal one-on-one support.

Three new services have recently been added which are proving highly successful.

A Mindful Steps To Wellbeing mediation course is an online programme to help people manage stress, improve emotional regulation, and cultivate a greater sense of calm and resilience through guided mindfulness practices. “The course helps members reconnect with their bodies and build sustainable wellbeing strategies - often providing a lifeline during times of isolation or flare-ups,” Miranda explains.

Care Kete is a thoughtful and practical support package designed for members who are severely unwell and largely housebound. Each kete includes comforting and useful items such as tea, heat/cool packs, soothing balms, bed bath wipes and shampoo caps, mindfulness resources, and personalised notes – small gestures that offer big emotional support.

“For those in our most severe category, we also deliver nutritious frozen meals directly to their doors, ensuring they have easy access to nourishing food during times when cooking is not possible. These acts of care help reduce isolation, improve daily wellbeing, and remind our members they are not alone.” 

And finally, a new Support Persons Workshop is now available for friends, whānau, and caregivers who walk alongside someone living with ME/CFS, fibromyalgia, or long COVID to help them provide compassionate and sustainable support without becoming overwhelmed or burnt out themselves.

“By equipping support people with knowledge, tools, and community, we strengthen the entire wellness journey – not only for our members, but for those who care for them. Supporting the supporters is essential to building long-term resilience and understanding.”

BayTrust Partnership

CCI Support will receive $10,000 this year from BayTrust to help cover operational costs. “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.

“We are very grateful to BayTrust for their support and partnership, over many years now. 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.” 

Looking ahead, CCI Support’s greatest wish is to reach more people in need. In the Bay of Plenty alone, an estimated 2500 people are living with ME/CFS and another 6400 with long COVID – the majority of whom are undiagnosed.

“We know that early 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, we could extend that life-changing support much further.”