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OUR PURPOSE
That every person with ME/CFS and Long COVID in Canterbury and the West Coast lives the best quality of life possible.
ME/CFS has the lowest health-related quality of life of twenty major illnesses studied — yet there are no specialist clinics, no specialising GPs, and no public health funding for this community in our region. We are the only locally based organisation filling that gap, and the need is growing.
2,814+
people in our region living with ME/CFS
33,053+
people in our region living with Long COVID post-viral fatigue
0
GPs in our region specialising in ME/CFS
$0
Health NZ | Te Whatu Ora funding
THE FUNDING GAP
A clinical service running entirely on grants and donations.
75% of people with ME/CFS cannot work or attend school, and 25% are severely unwell and bed-bound. Despite this, our community receives no targeted support from the public health system.
Our Registered Nurse service, advocacy, and community supports cost $200,000+ a year — funded entirely by community foundations, gaming trusts, charitable trusts, and donations. Right now 55 people sit on our nurse service waiting list, facing up to a seven-month delay, because capacity is limited by funding alone.
Long COVID has made a historically under-recognised illness an urgent and growing one. Every dollar donated goes directly to a community no one else is funded to serve.
$0
PUBLIC HEALTH FUNDING
HOW WE WORK
Five programme areas, one purpose.
Select a programme area to see what we deliver and the difference it makes for people with ME/CFS and Long COVID, their whānau, and the wider health system.
For many people, being believed is the first step towards living well with this illness.
WHAT WE DELIVER
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Website, newsletter, and social media presence and campaigns
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Group meetings with discussion and presentations
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Welcome information packs, library, and other resources
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Contribution to Health Pathways content for health professionals
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Contribution to public-facing content on Health NZ topics
WHAT CHANGES
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Illness experience is acknowledged and validated
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Clarity around suitable approaches for managing the illnesses
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Sense of community and reduced feelings of isolation
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Improved wellbeing and support for whānau
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Wider awareness of ME/CFS
OUR KEY OBJECTIVES
What we are working towards
Diagnosis and symptom management
Enable people to access a diagnosis and receive support with managing their symptoms.
Financial support
Enable people to explore and obtain the financial support available from the government.
Community and validation
Enable community connections, provide validation, and reduce isolation
Education and information
Provide education and information for health professionals and for self-management.
OUR VALUES
We are informed by the Code of Health and Disability Services Consumers' Rights, and the Hui Process and Meihana Model for building client relationships.
OUR REACH
Demand for our services keeps growing
Figures for the year ending 31 August 2025, with 2022 comparisons where available.
292
clients in our Registered Nurse service this year (437 enrolled since 2020)
13
students supported at the Southern Regional Health School
631
newsletter subscribers
▲from 160 in 2022
777
Facebook page followers
▲ from 252 to 2022
560
online peer support forum members
▲from 230 in 2022
53
paid staff hours per week
(1.33 FTE)
▲ from 38 to 2022
74
clients assisted by our Work and Income Advocacy Service
47
volunteer hours per week
▲ from 25 in 2022
All of this was delivered by 1.33 full-time-equivalent paid staff, supported by volunteers - many of whom live with the illness themselves.
" If I hadn't met with the nurse who validated my experience of my chronic illness and advocated for me with my GP to obtain a diagnosis, I would not be here. Life had got too hard.
Client of the MECFS Canterbury Registered Nurse Service
WHY YOUR SUPPORT MATTERS
The only door open to this community.
There is no other local organisation or public service formally supporting people with ME/CFS and Long COVID in Canterbury and the West Coast. When someone is too unwell to work, study, or leave their home, we are where they turn.
Funding is the only thing limiting our capacity. Our waiting list exists not because the need is unclear, but because grants and donations are our sole income. Your support directly extends a clinical and community service that the public system does not provide.
ARE YOU IN A POSITION TO SUPPORT...
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A proven Registered Nurse Service with measurable outcomes - diagnosis, symptom management, and fewer emergency department visits
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Advocacy that lifts incomes and reduces stress for families living in poverty
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Connection and validation for some of the most isolated people in our region
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A growing need - an estimated 33,053 people in our region live with Long COVID post-viral fatigue
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Lean delivery - 1.33 FTE paid staff matched by nearly equal volunteer hours
Prevalence figures are conservative estimates: ME/CFS at 0.4% of population (1 in 250); Long COVID post-viral fatigue at 4.7% of population. Service statistics from the MECFS Canterbury Statistics Snapshot, year ending 31 August 2025.