A Tauranga-based charity is stepping up support for New Zealanders living with complex chronic illnesses, tackling isolation among those with ME/CFS, fibromyalgia and long Covid.

Complex Chronic Illness Support (CCI Support) is a not-for-profit organisation offering services including education, advocacy, counselling and peer support.

Chief executive Miranda Whitwell said many people feel isolated and disbelieved when living with these conditions.

“They ... can carry a lot of guilt about not being able to do the things others might expect of them, like working or keeping up with everyday life.

“For many people, it’s not that those around them don’t care, but that these conditions can be really hard to understand if you haven’t experienced them yourself.”

Whitwell said that lack of understanding can leave people feeling alone.

“That’s why our role to help build understanding, while offering a space where people feel validated, heard and supported, is so vital.”

She described daily life for many as a constant balancing act.

“Imagine if you’ve charged your phone and it looks 100%. With ME/CFS they could wake up and it’s 30%, and they have to decide what to do with that energy – whether they eat, shower or have a visitor.

“Everything is a trade-off, and if they go over that limit they can end up in bed for multiple days.”

CCI Support works alongside GPs and hospitals to help people maintain stability and independence, particularly as demand for services grows and some members require home-based care or are bedbound.

Accessible, low-energy ways to connect – including online support – are critical, Whitwell said, especially given limited healthcare pathways for many of the conditions.

For some members, the organisation has become a lifeline.

“Before finding them, I felt completely alone and overwhelmed. Now I feel understood, supported, and more in control of my condition,” one member said.

Mark Arundel. Photo / Supplied

TECT Community Trust chair Mark Arundel said the organisation plays a vital role in the community.

“Complex Chronic Illness Support is a vital service because it stands beside people who are often facing isolation, uncertainty and a loss of independence.

“We know the difference early, compassionate support can make, not only for the individual, but for their family as well.”

Support is tailored to each individual, with members able to access one-on-one support, peer groups, wellness programmes, workshops, education sessions and practical help such as care packages, meal support and wellness checks.

Help is also available for whānau, carers, schools and health professionals.

Despite the demand, CCI Support has at times been forced to close referrals, leaving dozens of people waiting for assistance.

Whitwell said raising awareness was key to ensuring people get help earlier.

“Awareness of the conditions we support is really important because knowledge is power,” she said.

“Sometimes just knowing support is out there and available, and reaching out for help, is really important because we are there and we care.

“Doing it alone is so difficult, so reaching out for support can be life-changing.”

People in Tauranga and the Western Bay seeking support can learn more via the organisation’s website.