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.

The National Institute for Health and Care Excellence (NICE, UK) has today, Friday 29 October 2021, published the guideline for ME/CFS: diagnosis and management, after a robust 3 year review process. < Back NICE releases new guidance for ME/CFS 29 Oct 2021 The National Institute for Health and Care Excellence (NICE, UK) has today, Friday 29 October 2021, published the guideline for ME/CFS: diagnosis and management, after a robust 3 year review process. New NICE guideline creates hope - a paradigm shift in the care of people with #MEcfs Extracts from the Science for ME press release... "The National Institute for Health and Care Excellence (NICE, UK) has today, Friday 29 October 2021, published the guideline for #MyalgicEncephalomyelitis (or encephalopathy)/ #chronicfatiguesyndrome : diagnosis and management." "The guideline replaces the existing clinical guideline published in 2007 and aims to improve awareness and understanding about ME/CFS, provide guidance on when to suspect it (to enable earlier diagnosis), and includes recommendations on access to care, symptom management and care planning." "NICE staff and the members of the guideline committee have worked for over three years to carefully examine the evidence... The guideline is a publication of international significance, providing an example of good practice that will influence ME/CFS care around the world." - Including here in New Zealand. "The guideline makes it clear that graded exercise therapy (GET) should no longer be offered to people with ME/CFS, and that both cognitive behavioural therapy (CBT) and therapies based on physical activity are not curative. This is based on a review of the evidence, which rated the outcomes for studies of these interventions all of low or very low quality. This is a welcome and significant, evidence based change in approach from the 2007 ME/CFS guideline, in which CBT and GET were central to treatment. Link to the new NICE guidelines:  https://www.nice.org.uk/guidance/ng206 Previous Next

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.

Today we want to congratulate the team involved in the establishment of Dysautonomia New Zealand and their progress in becoming a registered charity.   < Back Dysautonomia New Zealand 17 Feb 2026 Today we want to congratulate the team involved in the establishment of Dysautonomia New Zealand and their progress in becoming a registered charity. Today we want to congratulate the team involved in the establishment of Dysautonomia New Zealand and their progress in becoming a registered charity. They hope to fill the gap in response to a clear and ongoing need for greater awareness, support, and understanding of dysautonomia in Aotearoa New Zealand. Visit their website https://www.dysautonomianz.co.nz and sign up to their newsletters or offer your support. ___________________ Dysautonomia is an umbrella term for conditions where the autonomic nervous system (ANS) does not function as it should. The ANS controls automatic body processes like heart rate, blood pressure, digestion, and temperature regulation. When it malfunctions, everyday activities such as standing up, eating, or even concentrating can become challenging. Conditions include POTS (Postural Orthostatic Tachycardia Syndrome), Orthostatic Hypotension, Inappropriate Sinus Tachycardia and more. Previous Next

Support a Cause with Every Cup < Back ME/CFS Awareness Mugs for Blue Sunday 2026 21 Apr 2026 Support a Cause with Every Cup If you’ve been looking for a simple way to support ME/CFS Awareness this may, we’ve got something practical, meaningful and genuinely useful. Mugs designed with chronic illness life in mind. We’ve just launched 3 new ME/CFS themed mugs to our line of merch as part of our fundraising efforts for Blue Sunday on Sunday 17 May 2026 a much-loved event in ME/CFS awareness month. Why These Mugs Matter Living with ME/CFS often means adjusting to a slower pace of life. Small comforts like a warm drink can become part of a meaningful routine. These mugs are designed to reflect that reality with simple, relatable designs, gentle humour, and validation. Perfect for tea, coffee, or whatever gets you through the day. Order Early for Blue Sunday To make sure your mug arrives in time for Blue Sunday on 17 May we recommend ordering as soon as possible. All drinkware ordered in April and May will count toward our fundraising total and contributes directing to supporting people in Canterbury and the West Coast with ME/CFS and Long Covid. A Small Act That Adds Up Not everyone has the capacity to attend events or take part in large campaigns and that’s ok. This is a lower energy way to show support, start conversations, and be part of something meaningful. Get yours. Previous Next

Your feedback shapes what we do... < Back 2026 Annual Survey – Open Now 24 Jun 2026 Your feedback shapes what we do... Each year we ask our community how we're doing and what would make a difference. This is that. The survey has six optional questions and takes between three and ten minutes, depending on how much you have to say. All questions are optional, answer one or answer all of them. Your feedback helps us to prioritise how we use our limited resources and gives us something concrete to share with funders and supporters. We want to hear what has worked, what hasn't, and what would actually help. Both positive experiences and honest critique are useful to us. All responses are anonymous unless you choose to share your details. ✦ Survey closes: Thursday 16 July 2026 ✦ Take the survey here Ngā mihi, Rose, Greta, Siju, Karen, Tom, and Ruth The Board of ME/CFS Canterbury / West Coast Charitable Trust Previous Next

Join our new facebook group for people affected my ME/CFS and Long Covid living on the West Coast < Back New West Coast Peer Support Group 4 Oct 2025 Join our new facebook group for people affected my ME/CFS and Long Covid living on the West Coast In response to requests from our community on the West Coast, we have created a new Facebook group. We hope the new private group will help people living with ME/CFS and long COVID in the West Coast region to connect and support each other, as well as share information about local events and services. It will also allow us to keep you up to date with our meetings and other initiatives in your region and provides a space for people to self-organise local social catchups. Please request to join the group by visiting www.facebook.com/groups/mecfssupportgroupwestcoast Previous Next

Health NZ has acknowledged that ME/CFS is a debilitating, long-term illness in the new Health Conditions section on their website. < Back New Health Information page for ME/CFS from Health NZ 22 Sept 2025 Health NZ has acknowledged that ME/CFS is a debilitating, long-term illness in the new Health Conditions section on their website. The Health Conditions pages are intended for the public to provide introductory information about health conditions and their causes, symptoms, diagnosis, and treatments. For Chronic Fatigue Syndrome, Health NZ highlights the key symptoms, the diagnostic criteria in use in New Health NZ has acknowledged that ME/CFS is a debilitating, long-term illness in the new Health Conditions section on their website. For Chronic Fatigue Syndrome, Health NZ highlights the key symptoms, the diagnostic criteria in use in New Zealand, the need to pace your activity to avoid triggering Post Exertional Malaise, and more. You can read the information and share it with whānau from here: https://info.health.nz/conditions-treatments/brain-and-nerves/chronic-fatigue-syndrome It’s worth mentioning that GPs have access to more extensive clinical guidance for ME/CFS on Health NZ’s Health Pathways website for doctors. The Health Pathways for ME/CFS was updated and extended in February 2025, so do ask your GP if they have read the guidance for ME/CFS on Health Pathways recently. Previous Next

Radical Rest Challenge - Nominate a friend or two (or yourself) < Back Give-a-little Day 2nd December 2025 20 Nov 2025 Radical Rest Challenge - Nominate a friend or two (or yourself) This Give-a-Little day, we’re inviting our extended community to slow down... Radically! People living with ME/CFS and Long Covid don’t get to choose to rest. It’s not self care... it’s survival. For many people with ME/CFS, especially the approximately 25% living with Severe ME/CFS, even seemingly small activities cause debilitating symptoms. With a broken energy system at a cellular level, it is critical to #StopRestPace and #PlanPacePrioritise to stabilise symptoms and avoid reducing functionality further. So here’s our #RadicalRestChallenge challenge: ✦ Nominate a friend or two (or yourself) ✦ Radically Rest for 25 minutes – This means no screens, no distractions, just full rest with eyes closed. ✦ Donate $10 to support people in our community living with ME/CFS and Long Covid. If you try the #RadicalRestChallenge but can’t make it through the full 25 minutes that’s ok, It’s harder than it sounds! For every minute you can’t complete, add $1 per minute to your give-a-little donation total. It’s a lighthearted challenge with a serious message: for people with ME/CFS, rest is not optional... it’s essential! Let’s show up for those who can’t - by resting with them or donating for them. ✦ Date: Tuesday 2 nd December 2025 ✦ Where: Visit our give-a-little page https://givealittle.co.nz/org/mecfs-group-canterbury-inc ✦ Challenge: #RadicalRestChallenge #GiveALittleDay Every dollar and every moment of awareness makes a difference. Haven't heard the term before? What is Radical Rest? It means complete, uninterrupted rest. No screens, no conversations, no stimulation. People often opt for earplugs and an eye mask. It's a level of stillness that people with ME/CFS rely on to prevent worsening symptoms and to allow their bodies to try and maintain baseline. Download our Radical Rest Challenge poster to share with others. Previous Next

Wendy Dragt, a nurse at MECFS Canterbury, recently presented an overview of Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD) for us. The talk covered definitions, diagnosis, management, plus more. < Back Ehlers-Danlos Syndrome (EDS) and Hypermobility Disorders presentation 5 Apr 2025 Wendy Dragt, a nurse at MECFS Canterbury, recently presented an overview of Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD) for us. The talk covered definitions, diagnosis, management, plus more. Wendy Dragt, a nurse at MECFS Canterbury, recently presented an overview of Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD) for us. The talk covered definitions, diagnosis, management, plus more. People with EDS or HSD have joints that have a greater range of motion than is expected or usual. EDS also has significant connective tissue abnormalities that affect skin, joints, muscles and blood vessels. Symptoms can include subluxation, dislocation, chronic pain and fatigue, Dysautonomia (POTS), gastrointestinal issues, Mast Cell Activation Disorder, and more. The recording is now available to watch on our YouTube Channel. https://youtu.be/6jEasfypq0k Expand the description on the video to access the slide deck in pdf format (with bonus slides) and a list of other useful references. Previous Next

A big thank you to the librarians at Tūranga, the central Christchurch City Libraries Library, for helping us to profile ME/CFS for this World ME Day. < Back Check out our display at Tūranga Library for World ME Day 27 Apr 2026 A big thank you to the librarians at Tūranga, the central Christchurch City Libraries Library, for helping us to profile ME/CFS for this World ME Day. Visit the display in front of the lifts on the third floor to check out our information posters and some of the books that the library has that may be of interest to those with ME/CFS and living with chronic illness. The display is scheduled to run from Friday, 1st May to Sunday, 17th May. World ME Day falls on Tuesday, 12th May, but the whole of May is a time to raise awareness. The Tūranga library is located at 60 Cathedral Square, Central Christchurch. There are two mobility carparks directly outside. Free Zines Our stand has a couple of free zines by Hazel Camp at hazyhappiness.com for you to read and take away. The Things You Don’t See: Invisible Illness – life with severe ME/CFS Kind Reminders – Non-toxic positivity for when things suck a lot Our own Zine 'Five ways to support mental wellbeing for ME/CFS' is also available. Book Recommendations The Library has books that may be of interest on shelf 616 – Diseases. The call number for Chronic Fatigue Syndrome is 616.0478 . Books on Long COVID are included in the Pneumonia Covid Dewey code 616.2414 . There are books on living with long term chronic illness in 616.044 and elsewhere. Books we recommend from the Christchurch City Libraries collection include: Chronic Fatigue Syndrome/M.E. - Symptoms, Diagnosis, Management by Rosamund Vallings Classic Pacing for A Better Life With ME by Ingebjørg Midsem Dahl Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis - It's Mitochondria, Not Hypochondria by Sarah Myhill Lighting up A Hidden World CFS and ME by Valerie Free A Still Life - A Memoir by Josie George The Puzzle Solver - A Scientist's Desperate Quest to Cure the Illness That Stole His Son by Tracie White Audio Books we recommend from the Christchurch City Libraries collection include: Waiting for Superman - One Family's Struggle to Survive and Cure Chronic Fatigue Syndrome by Tracie White Breath - The New Science of A Lost Art by James Nestor The Long Covid Handbook by Gez Medinger The Yin and Yang of Self-compassion - Cultivating Kindness and Strength in the Face of Difficulty by Kristin Neff eBooks we recommend from the Christchurch City Libraries collection include: How to Be Sick A Buddhist-inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard Long Covid - Expert Advice, From Diagnosis to Treatment and Recovery : A Practical Guide for Those Affected, Their Loved Ones, and Medical Professionals by Steven Faux Our own Library MECFS Canterbury also has our own library of books that can be borrowed by our members. If you can’t get to our office or to one of our meetings, we can post these out to you along with a post-paid return bag. View the catalogue online . . Posters for our library display for World ME Day Check out our posters here. Previous Next

Many people living with ME/CFS live in permanent lockdown. When you move out of lockdown - and get back into a fulfilling life with a variety of choices and activities - we ask you to remember those that will stay in lockdown because they have ME/CFS. < Back ‘Years in Lockdown’ video for International ME Awareness Day, 12th May 2020 11 May 2020 Many people living with ME/CFS live in permanent lockdown. When you move out of lockdown - and get back into a fulfilling life with a variety of choices and activities - we ask you to remember those that will stay in lockdown because they have ME/CFS. For ME Awareness Day 2020 we prepared a short 2.5 minute video to highlight that many people living with ME/CFS live in permanent lockdown. When you move out of lockdown - and get back into a fulfilling life with a variety of choices and activities - we ask you to remember those who will stay in lockdown because they have ME/CFS.” https://youtu.be/vuRrh7NiknQ https://www.youtube.com/watch?v=vuRrh7NiknQ Previous Next