Can you help support what MECFS Canterbury does to meet the growing, unfunded need of people living with ME/CFS and Long COVID in Canterbury and the West Coast? Support our Impact 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. 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. Information Sharing & Validation Clinical Support Connections Practical Support Advocacy & Networking For many people, being believed and having access to good quality information is the first step towards living well with this illness. WHAT WE DELIVER Website, newsletter, and social media presence and campaigns Group meetings with discussion and presentations Welcome information packs, library, and other resources Contribution to Health Pathways content for health professionals Contribution to public-facing content on Health NZ topics WHAT CHANGES Illness experience is acknowledged and validated Clarity around suitable approaches for managing the illnesses Sense of community and reduced feelings of isolation Improved wellbeing and support for whānau Wider awareness of ME/CFS Most people with ME/CFS are socially isolated. Connection is care. WHAT WE DELIVER Online peer support groups on Facebook In-person and online facilitated meetings Informal social catch-ups and activities One-on-one connections with friendly callers WHAT CHANGES Sense of community and understanding Friendships Reduced isolation Improved wellbeing Our nurses are often the first professional that people have seen who have understood their illness. WHAT WE DELIVER Diagnostic assessments and support with symptom management Support with common comorbidities Advocacy with each client's health team Referrals to other health and social services Support for students at the Southern Regional Health School Education for health professionals, whānau, teachers, and others WHAT CHANGES Expert assessment gives clients clarity about their health issues GPs are supported to diagnose with confidence Tailored guidance, improved functionality, and improved wellbeing Accommodations from whānau, educators, and workplaces Fewer people attending the Emergency Department Many people in our community live with no or limited support and in poverty. Practical help and information eases the daily load. WHAT WE DELIVER Work and Income Advocacy Service Living with ME/CFS section on our website Outreach volunteers for gardening, housework, friendly contact, and more Equipment for loan and an intervention fund Health and wellbeing activities, such as online Tai Chi, and art and craft sessions WHAT CHANGES More stable income from MSD Reduced stress and awareness of supports available Support to reduce symptom flares Improved wellbeing Changing the system and awareness so our community is understood and supported everywhere they go. WHAT WE DELIVER Submissions to government with other ME/CFS organisations Collaboration on national awareness campaigns Education and guidance for health professionals Relationship with Health NZ Sharing resources and collaborating with the wider health and community sector WHAT CHANGES Increased understanding of ME/CFS in government departments and the health and community sectors Increased public awareness Improved support from others Reduced stigma 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 Donate Now 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 Compassion Respect Equity Patient-centred Collaboration 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. Can you volunteer with us? " 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... A proven Registered Nurse Service with measurable outcomes - diagnosis, symptom management, and fewer emergency department visits Advocacy that lifts incomes and reduces stress for families living in poverty Connection and validation for some of the most isolated people in our region A growing need - an estimated 33,053 people in our region live with Long COVID post-viral fatigue Lean delivery - 1.33 FTE paid staff matched by nearly equal volunteer hours Donate Now 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.

Building a trusting relationship with your doctor is an important part of any illness management plan. This is especially the case when you have a complex and long-term illness like Myalgic Encephalomyelitis /Chronic Fatigue Syndrome and may also have other comorbidities. Working with your Doctor Building a trusting relationship with your doctor is an important part of any illness management plan. This is especially the case when you have a complex and long-term illness like Myalgic Encephalomyelitis /Chronic Fatigue Syndrome and may also have other comorbidities. ME/CFS can be a challenging illness for doctors. They may not have received any training in ME/CFS, nor be aware of the current clinical guidance. Also, ME/CFS can present differently in each person and there are limited treatments available. This situation can lead to frustration for both the doctor and the patient. An informed GP with a good understanding of your situation, may be able to refer you to other health services and can provide medical evidence for a range of financial supports from Work and Income and information for employers. We have put together some tips that may help you to partner with your doctor, to share the lived experience, and to ensure that the doctor is aware of current and emerging evidence-informed practice. Open our 'Working with your Doctor' handout The Healthify website also has advice for making the most of health care provider visits in New Zealand www.healthify.nz/hauora-wellbeing/h/healthcare-provider-visits . Clinical Advice for GPs about ME/CFS 'HealthPathways' is an online system from Health NZ that GPs log into to view best-practice clinical advice for assessing and managing a wide range of health conditions and concerns. Ask your health professionals if they have read the ME/CFS topic on HealthPathways recently, as it includes current best-practice clinical advice, based on the IOM 2015 diagnostic criteria and management guidelines from NICE , CDC , Mayo Clinic and ME/CFS expert clinicians. The shorter, public version of the advice can be viewed at www.info.health.nz/health-topics/conditions-treatments/brain-and-nerves/chronic-fatigue-syndrome . To encourage your health team to check it out, we have prepared a letter about the ME/CFS HealthPathway . Print this out, or send them the link, or email our office if you would like a copy of the letter posted out to you to take to your next GP appointment. Your doctor may also be interested to view the excellent 96 page 'Clinical Care Guide: Managing ME/CFS, Long COVID, & IACCs' from Bateman Horne Centre , USA, who are leading international ME/CFS clinicians. Also see our links for health providers . Forms to help you plan for an appointment A planning sheet allows you to write down what you want to share and how you want to say it, and also, to take notes about what is said in the appointment. We suggest using one of the following templates (these are not ME/CFS specific) to get your thoughts and priorities organised before your appointment: The single page Preparing Information for your Doctor Appointment template from Emerge Australia, a ME/CFS charity. This form provides space for you to write your goals and questions for this appointment, some notes about follow-up from your previous appointment, and more. The Appointment Day template set (7 editable pdf templates) is a non-ME/CFS specific set of single-page forms available for free from BeforeMyVisit.com, an AI health platform based in Ireland. Take a look and see if you would find any of these useful. They also have an AI tool that you might want to try out. The Health Quality & Safety Commission, NZ, also has a two-page Plan for your next Health Care Visit sheet which is available in different formats and languages . Forms for making your illness more visible There are a variety of forms and tools available to make the symptoms and impact of living with chronic illness more visible to your health team. Think about what you want to share… Is it your reduced capacity to do things, or what your symptoms are, or both? FUNCAP The Functional Capacity Questionnaire was developed for people who experience post-exertional malaise. It comes in two question lengths (55 and 27) to document your functional capacity, support needs, and loss of independence for a range of activities... personal hygiene and basic functions, walking and moving around, being upright, activities in the home, communication, activities outside your home, reactions to light and sound, and concentration. There is an online version of FUNCAP55 which generates a pdf of your results. For iPhone users, there is a FUNCAP27 app. For others, print the FUNCAP27 pdf and calculate your own results. A research article was published in 2024 to document why and how the questionnaire was developed. Long COVID For people with Long COVID, the two-page Post COVID Symptom Map, developed by Physiotherapy New Zealand for Ministry of Health, highlights symptom severity and functional disability. Bateman Horne Centre Forms The single-page editable Good Day Bad Day Questionnaire from Bateman Horne Centre has ten questions for you to answer to highlight your range of function on baseline/good days and PEM/crashed/bad days and your hours of upright activity (HUA). BHC also has a Health Assessment worksheet to note symptom scores, hours of upright activity, pain areas and appointment priorities. Both forms have been developed for ME/CFS and related chronic illness. Emerge Australia Forms The single-page Symptom Severity and Severity Hierarchy Profile from Emerge Australia allows you to identify your symptoms, their severity and your priority in having them addressed. They also have a Sleep and Pain Profile form. Both forms have been developed for ME/CFS and related chronic illness. Basic ME/CFS Diary Our Activity and Symptom Diary allows you to monitor and log your activity, biometrics, and symptoms over 7 days. This may help you and your health team to identify what triggers post-exertional malaise for you and what your activity baseline and pacing needs are. Generic Symptom Severity Scale Form The two-page editable Symptom Severity Scale from Care Patron is not ME/CFS specific. It includes space to rate and describe your symptoms and their impact. Finding a new GP There are services around the region that can assist you with finding a local General Practitioner and other services. Ask them to recommend a GP who is taking new patients and supports and understands your health conditions: Tautoko Hauora in Canterbury Awawhenua Whanau Services in South Canterbury. West Coast Health for the West Coast. The national www.healthpoint.co.nz website also has a search function to find local and online services. Pegasus Health in Canterbury also provides useful advice about finding Your Best Care | Choose your best health care option . It can be useful talking to other people living with the same health conditions about the health professionals that they have found helpful. My Health Passport My Health Passport is a booklet where you can write down information about how you want people to communicate with you and support you when you receive a health or disability service, including when you visit a medical centre or the hospital. It is not a tool to help doctors diagnose or monitor patients, nor a substitute for a patient’s medical records. But it can be a useful way to get key information across, especially at a time when you may not be cognitively present to communicate well. We have some A5 hard copies which we can provide to members. Please email us to post out to you, or you can pick up at a group meeting. Alternatively, you can download from the Health and Disability Commissioner website. They even have editable pdf versions, which you could edit and then print, or keep on your phone.

Group Meetings and Events We host a range of different events around our region, both online and in-person. Sometimes we invite expert speakers, other times we may have a topic for discussion or gather to do an activity together. Events Calendar You may wish to follow us on Facebook , or join us as a Member , to be notified of our upcoming events. Group Meetings Our group meetings may have an educational, support, or social focus for people affected by ME/CFS and long COVID. These group meetings are a good opportunity to share information and connect with other people who understand life with a chronic illness. Non-members are welcome to attend. Meetings and social catchups are currently held in Christchurch, Rangiora, Timaru, Westport, Greymouth, Hokitika, and also, online. See the calendar above and the location details below for more information. Christchurch In-Person These are held on the last Wednesday of each month from 1pm to 3pm. A highlight for attendees is connecting afterwards from 2pm to 3pm with a cup of tea, and dairy and gluten free refreshments. We meet at the lovely Mary Potter Community Centre in St Albans. See Location Rangiora In-Person These are held on the third Wednesday of every second month from 1pm to 3pm (Jan, Mar, May, Jul, Sep, Nov). From 2pm to 3pm we have afternoon together, with dairy and gluten free options. We usually meet in The Skurr Centre, 156 Ashley Street, Rangiora Showgrounds, Rangiora. See Location Timaru In-Person These are held on the third Wednesday of every second month from 1pm to 3pm (Feb, Apr, Jun, Aug, Oct, Dec). From 2pm to 3pm we have afternoon together, with dairy and gluten free options. We usually meet in the Timaru Library, Community Room, 56 Sophia St, Timaru. See Location Online Meeting (Zoom) These are held on the second Wednesday of each month from 12 noon to 1pm. See the event calendar below for more details. These online meetings can be a great option for people who are unable to attend the in-person meetings, for various reasons such as being bed-bound, house-bound, or living outside of Christchurch. Register Online Hokitika In-Person These are planned for the first Tuesday of every third month from 10 am to 11.30am. Morning tea with dairy and gluten free options provided at 11 am. We usually meet in WestREAP, 72 Tudor Street, Hokitika See Location Online Craft (Zoom) These are held every Thursday at 11am to noon. Join any week, at any time. This is a friendly online social space to connect and chat while you make progress on a creative project. Register Online West Coast Catchups Social catchups in a café are sometimes self-organised by the community in Westport, Greymouth, and Hokitika. Find out the latest by joining the Facebook group for people with ME/CFS and long COVID in the West Coast. Join Group Education for Health Professionals We are able to facilitate and deliver education events for health professionals from time to time. Please get in touch if this is of interest. CONTACT US Event Resources Following each event, we share information and summaries in our newsletter, by email to our members, and also in our Facebook group. This ensures that people who were interested but could not attend the event, can get familiar with the information. If a recording of an educational presentations was made, we share this on our YouTube channel, along with any handouts. GO TO OUR YOUTUBE CHANNEL

Advocacy and Networking MECFS Canterbury connects and works with other organisations and individuals to increase awareness of ME/CFS and advocate for better services and research. We collaborate with other organisations such as the national ME/CFS association, ANZMES; Te Whatu Ora Waitaha (formerly the Canterbury District Health Board); and Te Whatu Ora Te Tai o Poutini (formerly West Coast DHB). We are available to present to groups about ME/CFS and appropriate patient-centred care and supports. Please get in touch with us if this would be helpful for your workplace or organisation.

Contact Form: First Name Last Name Email Phone Topics Tell us what you need help with SEND Thanks for query. We’ll get back to you shortly. Our Contact Details: For any enquiries, please contact us via the form above, or by email, text, or phone. Email: info@mecfscanterbury.nz Text: 020 4027 0176 Phone: 03 365 5887 Postal address: PO Box 10090, Phillipstown, Christchurch 8145 Our Office: Please ring to make a time to visit. The office is not always open as we are a part-time team, and often have appointments outside the office. Our office is located at: 71 Orbell St, Sydenham, Christchurch 8023 There is onsite carparking. Use park #7 or #8, or one of the visitor carparks. Christchurch Venue: Our monthly Christchurch in-person meetings are held at the lovely Mary Potter Community Centre. Address: 442 Durham St North, St Albans, Christchurch 8014 This venue is just north of Bealey Avenue and has 30 onsite carparks. It also has comfortable lounge chairs and padded seats, and a beautiful garden. To get familiar with the centre before you arrive, you may like to watch the centre’s walkthrough video. Rangiora Venue: Our Rangiora in-person meetings are currently held at The Skurr Centre. Address: 156 Ashley Street, Rangiora Showgrounds, Rangiora This venue has onsite carparks. Our Meeting Venues: Timaru Venue: Our Timaru in-person meetings are held at the Timaru Library, Community Room. Address: 56 Sophia St, Timaru. Hokitika Venue: Our Hokitka in-person meetings are held at WestREAP. Address: 72 Tudor Street, Hokitika. Other Venues: We use other venues from time to time. Please check the event listing to confirm venue location. Join us: To receive support and /or information about ME/CFS from us on a regular basis, please sign up as a member (it is free). Please complete our membership form, either: Join online or Print PDF and post

Bequest A gift of any size in your Will, can increase quality of life for many people affected by ME/CFS and Long Covid. MECFS Canterbury recommends talking to a solicitor to write or update your Will. They will require our registered charity number to ensure your gift goes to the right place. Before getting in touch with them, you could start thinking about how you would like to give. You may want to consider giving a: Residual gift After providing for your family and loved ones, you can gift the remainder of your estate, or part of it, to MECFS Canterbury. Percentage You could divide your estate between a number of people and charitable organisations by allocating a percentage to each one. Specific gift This could be a specific sum, jewellery, real estate, shares or anything else you possess. You will also need this information: Our registered address is MECFS Canterbury, PO Box 10090, Phillipstown, Christchurch 8145. Our registered charity number is CC57086. If you would like any further information, or if you would like to talk to our Manager in confidence, please call 020 4091 9153, or email info@mecfscanterbury.nz . Please let us know of your intentions It would be very helpful for us if you let us know your intentions. Leaving a gift to us means a lot and we would like to be able to thank you for this. CONTACT US On behalf of our ME/CFS community, thank you for your consideration.

The activities of MECFS Canterbury for our ME/CFS and long COVID community, and the outputs and outcomes from these. Five programme areas to make an Impact 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. Information Sharing & Validation Clinical Support Connections Practical Support Advocacy & Networking For many people, being believed and having access to good quality information is the first step towards living well with this illness. WHAT WE DELIVER Website, newsletter, and social media presence and campaigns Group meetings with discussion and presentations Welcome information packs, library, and other resources Contribution to Health Pathways content for health professionals Contribution to public-facing content on Health NZ topics WHAT CHANGES Illness experience is acknowledged and validated Clarity around suitable approaches for managing the illnesses Sense of community and reduced feelings of isolation Improved wellbeing and support for whānau Wider awareness of ME/CFS Most people with ME/CFS are socially isolated. Connection is care. WHAT WE DELIVER Online peer support groups on Facebook In-person and online facilitated meetings Informal social catch-ups and activities One-on-one connections with friendly callers WHAT CHANGES Sense of community and understanding Friendships Reduced isolation Improved wellbeing Our nurses are often the first professional that people have seen who have understood their illness. WHAT WE DELIVER Diagnostic assessments and support with symptom management Support with common comorbidities Advocacy with each client's health team Referrals to other health and social services Support for students at the Southern Regional Health School Education for health professionals, whānau, teachers, and others WHAT CHANGES Expert assessment gives clients clarity about their health issues GPs are supported to diagnose with confidence Tailored guidance, improved functionality, and improved wellbeing Accommodations from whānau, educators, and workplaces Fewer people attending the Emergency Department Many people in our community live with no or limited support and in poverty. Practical help and information eases the daily load. WHAT WE DELIVER Work and Income Advocacy Service Living with ME/CFS section on our website Outreach volunteers for gardening, housework, friendly contact, and more Equipment for loan and an intervention fund Health and wellbeing activities, such as online Tai Chi, and art and craft sessions WHAT CHANGES More stable income from MSD Reduced stress and awareness of supports available Support to reduce symptom flares Improved wellbeing Changing the system and awareness so our community is understood and supported everywhere they go. WHAT WE DELIVER Submissions to government with other ME/CFS organisations Collaboration on national awareness campaigns Education and guidance for health professionals Relationship with Health NZ Sharing resources and collaborating with the wider health and community sector WHAT CHANGES Increased understanding of ME/CFS in government departments and the health and community sectors Increased public awareness Improved support from others Reduced stigma Want to help? We also have a single page pdf version of this Impact Map for you to view.

Help a friend with ME/CFS If you know someone who lives with ME/CFS, your help and support can make an important difference to their lives. Ask them what would make things easier for them, and what support they would like. Perhaps prepare a meal, provide quiet company, help with housework or maintenance, or pay a bill. If you invite them to an event, consider how to reduce the energy required of them, provide a quiet space to rest, and be aware that they may need to cancel on the day if they are too unwell. Believe them. Learn about their experience and the illness. Remember to manage the support you give around your own needs. Possible next steps: Support your friend to join us so that they can receive our services. FILL OUT OUR MEMBERSHIP FORM Have any questions? Please reach out to us. CONTACT US Guidance for hosting and gifts:

Volunteer Our volunteer team makes a huge difference to the support and services that we can offer people impacted by ME/CFS. We have volunteers who visit clients to provide practical supports such as housework and gardening tasks, walking dogs, assisting with filling forms and IT issues. Other people write articles for our newsletter or assist with our events and services in other ways. To sign up as a volunteer: We often have specific vacancies listed on the Volunteer Canterbury website for you to browse through. VIEW OUR VOLUNTEER VACANCIES ON VOLCAN Alternatively, please fill out our ‘Volunteer Expression of Interest’ form. We will be able to match you with people in need based on your location and the tasks you are willing to help with. FILL OUT OUR VOLUNTEER FORM For existing volunteers: After each client visit, please use the Outreach Event Form linked to below, to let us know what support was provided and when. There is also space to indicate future plans and to provide feedback. Remember to bookmark the website address so it can be found easily after each visit. Thank you for being involved in such a practical way with our community! COMPLETE OUTREACH EVENT FORM

About MECFS Canterbury Our Vision and Mission Our Organisation Impact Map Meet our Team Why the Kuaka? Testimonials Our Partners Complaints & Feedback Disclaimer

Ways to Help The generosity of the wider community enables MECFS Canterbury to provide our services. We welcome all sorts of contributions whether it be specific expertise, practical help, or donations of money and goods. We currently do not receive any income from government health funds. We are grateful for your interest in our organisation and assure you that any contribution makes an important impact. Help a friend with ME/CFS READ MORE Volunteer READ MORE Donate READ MORE Support our Impact READ MORE Fundraise READ MORE Buy from us READ MORE Support business in our community READ MORE Bequest READ MORE Sponsorship READ MORE

Sponsorship If your business or organisation is interested in supporting people living with ME/CFS, we would love to hear from you. There are opportunities to make a difference by sponsoring an event, service area, operational costs, funding key positions, and more. First Name Last Name Email Message Thanks for submitting! Send What to know more about us, our community, and our work? Visit our Impact Map page which covers our purpose, programme areas, key objectives and reach and highlights the funding gap. Review our detailed introduction documents: Impact Map - a single page which overviews our activities, outputs and outcomes. Statistics Snapshot Introduction to our Services and Community Needs Testimonies and Service Statistics Watch our 3-minute introductory video for potential funders...