ME/CFS Canterbury / West Coast

What ME/CFS Canterbury / West Coast does

ME/CFS Canterbury / West Coast is a New Zealand charitable trust (registered charity CC32072) founded in 1985 as an incorporated society and transitioned to a Charitable Trust model in 2024, operating from a main office at 71 Orbell St, Sydenham, Christchurch. The organization delivers community health and clinical support services for people affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid, and their whānau, across the Canterbury and West Coast regions of the South Island. Its service portfolio comprises a Registered Nurse Service for clinical assessment and management support, Volunteer Outreach for practical daily assistance, Work and Income Advocacy, in-person group meetings across Christchurch, Rangiora, Timaru, and Hokitika, an online community via a private Facebook group and Zoom meetings, a bi-monthly newsletter, a resource library, an Intervention Fund, and broader advocacy efforts. The organization also integrates ME/CFS clinical guidance into HealthPathways, HealthInfo, and Allied Healthways in partnership with Te Whatu Ora - Waitaha, and runs merchandise lines (Crash Wear, awareness pins) as supplementary income.

The organization's revenue model is non-commercial: services are free to members, and operating funding is sourced from a fragmented portfolio of community trusts, gaming trusts, government agencies, council grants, payroll giving, bequests, individual donations, and merchandise sales. It does not receive direct government health budget funding. The operating model is community-led, relying on a part-time staff complement of approximately six (covering Registered Nurses, an Acting Manager, Work and Income Advocate, Office Administrator, Accounts Administrator, Local Facilitators, and a Social Media Coordinator) supplemented by a substantial volunteer base that includes board members with governance, clinical, and lived-experience credentials. Technology is standard nonprofit infrastructure: a Wix-hosted website, Google Analytics, email, Zoom, Facebook, YouTube, and Meetup — there is no proprietary platform or AI/ML capability. Distribution is hybrid, combining physical venues for in-person meetings with digital channels for online community engagement, with a 2024 expansion of mandate to explicitly include the West Coast.

Name

ME/CFS Canterbury / West Coast

Legal name

ME/CFS Canterbury / West Coast Charitable Trust

Website

https://mecfscanterbury.nz

Company type

Private

Founded year

1985

Operating status

Operating

Headcount range

1–10 employees

Short description

ME/CFS Canterbury / West Coast is a New Zealand charitable trust (CC32072) founded in 1985 that provides free clinical, practical, advocacy, and peer support services to people with ME/CFS and Long Covid across the Canterbury and West Coast regions.

Ownership category

akta.pro rank

Product category

Community Health Support Services for ME/CFS and Long Covid

NAICS

Other Individual and Family Services (624190), Ambulatory Health Care Services (621)

SIC

Services-Misc Health & Allied Services, Nec (8090), Services-Health Services (8000)

akta.pro primary industry

Chronic Condition Lifestyle Coaching (Non-Clinical) (HSADAGAH)

akta.pro secondary industry

Safety Check-Ins, Wellness Calls & Monitoring (Non-Clinical) (HSABAAAG)

Keywords

• Chronic illness support
• Community health services
• ME/CFS advocacy
• Long Covid support
• Patient advocacy services

Headquarters

HQ city

Christchurch

HQ country

New Zealand

HQ region

Oceania

Offices5 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Infrastructure, Technology or R&D, Supply Chain

Revenue model

1. Donations and Grants: Primary funding from community trusts, gaming trusts, government agencies, and individual private donations. Does not receive government health budget funding.
2. Merchandise Sales: Sales of Crash Wear merchandise (loungewear, accessories), ME/CFS Awareness Pins ($5 each), and donated items via Trade Me.
3. Donations via Payroll Giving: Employees can donate through employer's payroll system with 33% PAYE credit.
4. Bequests: Legacy gifts through Wills.

Pricing tiers

Go-to-market motion1 record

Distribution channels3 records

Marketing channels8 records

Core offering

ME/CFS Canterbury / West Coast is a community health and clinical service organization providing free support services to people affected by ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and Long Covid in the Canterbury and West Coast regions of New Zealand. Its core offerings include a Registered Nurse Service for clinical assessment and symptom management, Volunteer Outreach for practical daily assistance, Work and Income Advocacy for financial benefits support, and Group Meetings/events (in-person and online) plus an online community for peer connection. The organization also generates supplementary revenue through merchandise sales (Crash Wear loungewear, awareness pins) and donated goods via Trade Me.

Product overview

ME/CFS Canterbury / West Coast operates as a community health and clinical service organization offering a suite of support services for people affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long Covid. The core service portfolio includes a Registered Nurse Service for clinical support and diagnosis management, Volunteer Outreach Services for practical daily assistance, Group Meetings and Events (both in-person across Christchurch, Rangiora, Timaru, and West Coast locations and online via Zoom), an Online Community Facebook group, Work and Income Advocacy for financial benefit support, bi-monthly Newsletters, a Library of educational resources, an Intervention Fund for financial assistance, and broader Advocacy efforts. The organization also generates revenue through merchandise including Crash Wear branded clothing and accessories, ME/CFS Awareness Pins, and a Trade Me store for donated items. All services are delivered free to members and focus on providing information, validation, clinical support, connection, practical support, and advocacy for the Canterbury and West Coast communities.

Differentiator

Problem solved

Functional benefit

Products and services

• Registered Nurse Service Clinical support service provided by registered nurses to assist with ME/CFS and Long Covid diagnosis, symptom management, and care coordination for members in Canterbury and West Coast.
• Volunteer Outreach Services Practical assistance program connecting volunteers with clients who need help with household tasks, gardening, form-filling, and other daily activities.
• Group Meetings and Events In-person and online community gatherings featuring educational presentations, support discussions, and social activities for people affected by ME/CFS and Long Covid.
• Online Community Private Facebook group providing peer support and connection for people affected by ME/CFS or related illness in Canterbury and West Coast regions.
• Work and Income Advocacy Support service helping people explore eligibility for financial benefits and allowances from Work and Income and assist with applications.
• Library Resource collection of books and materials about ME/CFS available for loan to members.
• Intervention Fund Financial assistance program to help members access supports and resources for managing ME/CFS.
• Advocacy Representation and advocacy efforts to improve recognition, care, and support for people with ME/CFS within the health system and broader community.
• Crash Wear Merchandise Official ME/CFS Canterbury merch range including soft loungewear, accessories, and statement items designed for the ME/CFS community, with proceeds supporting local advocacy efforts.
• ME/CFS Awareness Pins Enamel awareness pins available in Blue Ribbon, Forget Me Not single flower, and Forget Me Not flower cluster designs, sold to support ME/CFS awareness.
• Trade Me Store Online marketplace selling donated and fundraiser items to generate income for the organization's operations.

Quantifiable outcome

• More General Practitioners are comfortable assessing, diagnosing, and supporting people with ME/CFS due to education programme and partnership with Te Whatu Ora

Named customers1 record

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Six partnerships are on record, tiered core and minor.

• Te Whatu Ora - Waitaha (Health New Zealand - Canterbury)coreStrategic or Co-development Partner · 1 January 2019Since 2019, regular meetings with Te Whatu Ora managers to raise awareness of ME/CFS, discuss services, develop educational opportunities for health professionals, and ensure people with ME/CFS have access to standard health services. Partnership has led to more GPs being comfortable assessing and supporting people with ME/CFS.
• HealthPathwayscoreTechnology or IntegrationClinical guidance for ME/CFS based on IOM 2015 diagnostic criteria promoted by CDC, integrated into HealthPathways for clinicians to access at point of care.
• HealthInfocoreTechnology or IntegrationHealth information website for South Island public with ME/CFS factsheets and local health service information.
• Allied HealthwayscoreTechnology or IntegrationGuidance for allied health professionals including ME/CFS in PhysioFITT programme and Chronic Fatigue topics.
• ANZMES (Associated New Zealand ME Society)coreStrategic or Co-development PartnerNational advisory and support organisation for ME/CFS in New Zealand.
• GivealittleminorChannel Partner/ Reseller/ DistributorOnline fundraising platform for donations.

Scale indicators4 records

Recent moves8 records

Expansion highlights6 records

Emerging players

• Bateman Horne Center: US non-profit combining clinical care, provider education, and research for ME/CFS and Long Covid. Comparable to ME/CFS Canterbury in its integration of clinical service delivery and clinician education, though at a larger research-oriented scale.
• Body Politic / Long Covid Physio: Global patient-led Long Covid advocacy and peer-support community. Overlaps with ME/CFS Canterbury's online community, peer support, and clinician-education activities for the Long Covid cohort.

Direct peers

• Emerge Australia: Australian national patient organization for ME/CFS and Long Covid, providing information, peer support, advocacy, and education. Operates the same community health/advocacy model as ME/CFS Canterbury and represents a similar disease-specific non-profit archetype.
• Solve M.E. US-based non-profit driving research, advocacy, and patient support for ME/CFS and Long Covid. Comparable mission and disease-area focus, with broader research-funding activity that ME/CFS Canterbury does not pursue.
• ME Association (UK): UK national charity providing information, support, and education for people with ME/CFS, including a helpline and clinical resources. Closely comparable in mission and service mix to ME/CFS Canterbury, though operating at a national UK scale.
• Long Covid Support (UK): UK charity providing peer support, information, and advocacy for people with Long Covid. Highly relevant peer given ME/CFS Canterbury's 2024 expansion into Long Covid services and its combined ME/CFS/Long Covid service model.
• Associated New Zealand ME Society (ANZMES): National ME/CFS advisory and support organization in New Zealand, listed as a Core strategic partner of ME/CFS Canterbury. Operates the same disease-area support, advocacy, and education model but at a national scope, making it the closest direct peer.

Broad incumbents

• ME Research UK: UK charity funding biomedical research into ME/CFS. Comparable disease-area focus and non-profit health-advocacy status, but oriented to research funding rather than direct service delivery.

Regional players

• Aged Concern Canterbury: Christchurch-based community support organization for older people, where board member Greta Bond was previously CEO. Comparable in operating model (non-profit, community-led, regional, volunteer-supported) and overlapping service types such as advocacy and social connection, but different beneficiary population.

Others

• Southern Regional Health School: New Zealand health school supporting students with chronic illness to continue their education, referenced as a partner for young people with ME/CFS. Included as a thematic peer due to overlapping chronic-illness support model for the same region.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/@mecfscanterbury3547
• Facebookfacebook.com/mecfscanterburyinc
• LinkedInlinkedin.com/company/mecfs-canterbury
• Instagraminstagram.com/mecfs_canterbury

Revenue estimate

Valuation estimate

Number of profiles

Profiles12 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about ME/CFS Canterbury / West Coast