Subscribe to our Newsletter Sign up to become a member to receive our bi-monthly newsletter. The newsletter includes information about managing and living with ME/CFS, latest research, our activities, plus more. BECOME A MEMBER VIEW OUR NEWSLETTERS Latest News We plan to share key updates about ME/CFS, Long COVID, and our organisation here. If you remember seeing a notice about new guidance or initiative in our newsletter or social media and want to revisit the details, it will be worth checking the updates listed below. 30 Oct 2026 New Long COVID Guidance on Healthify Share this information about long COVID, it's management and some FAQs Read More 25 Aug 2026 Our August 2026 newsletter is now available! Theme for this issue is responses in our annual survey. We also highlight some new guides for Ehlers-Danlos Syndrome and Dysautonomia Read More 8 Jul 2026 ‘I feel trapped’: 29-year-old Wellington woman hasn’t left upstairs bedroom for four months Paddy Gower Does Stuff: Woman hasn’t left upstairs bedroom for months Read More 29 Jun 2026 Our June 2026 newsletter is now available! Theme for this issue is Manual Vagus Nerve Stimulation. Read More 24 Jun 2026 2026 Annual Survey – Open Now Your feedback shapes what we do... Read More 22 Jun 2026 Find Support After an ME/CFS or Long Covid Diagnosis in Canterbury and the West Coast Being told you have Myalgic Encephalomyelitis (ME/CFS) or Long Covid can feel overwhelming and isolating. Read More Load More

Nurse Wendy Dragt shares guidelines for managing our energy when we live with a broken energy system < Back Recording for Energy Management presentation now available 20 Apr 2026 Nurse Wendy Dragt shares guidelines for managing our energy when we live with a broken energy system A presentation on Energy Management has been delivered around our region over the last month or so. A recording of nurse Wendy Dragt presenting this is now available to watch on our YouTube channel. The video is one hour long, so definitely pace yourself while watching! It has some really useful content and covers: Frameworks for understanding energy limits Pacing and life hacks 13 Strategies to manage the energy that you have Tools for pacing There are quite a few links to further reading and resources in the description for the video as well. https://youtu.be/orxAmVmt41I?si=-kIpXBPbYvOP6Tev Previous Next

Spectrum of Severity The severity of ME/CFS is on a spectrum. The level of symptoms and severity experienced by each person with ME/CFS is unique and is likely to fluctuate over time. Some people do improve or go into remission for periods of time. Often those who are most severely unwell are those who were not given the advice to rest and pace activites when first unwell. Historically, four general terms are used to categorise the wide spectrum of disease severity and functional impairment seen in ME/CFS: Mild, Moderate, Severe, Very Severe. It’s worth noting that a ‘Mild’ level of severity may be close to a 50% reduction in functionality – certainly not a ‘mild’ impact for the person living with it. For people who are in the Mild category, they may be able to live a fairly normal life if they avoid exceeding their activity limits. Mild Mobile and able to self-care. May be working or attending school, but often with accommodations and by reducing other domestic and social activities. Severe Mostly homebound. Limited activities of daily living (e.g., self-care, showering, dressing). Severe cognitive difficulties. May be wheelchair dependent. Moderate Reduced mobility and restricted activities of daily living. Requires frequent rest periods and typically not working or attending school. Very Severe Bedbound. Unable to carry out most activities of daily living for themselves. Often extreme sensory sensitivity to light, sound, touch, etc. May need total care Quality of Life ME/CFS is a disabling illness that affects daily life. Studies that look at the Health-Related Quality of Life index (HRQoL) consider five dimensions: Mobility Self-care Usual activities Pain/discomfort Anxiety/depression Results of studies for people with ME/CFS confirm a significantly lower quality of life than the population mean and the lowest of all the compared conditions. ME/CFS – 0.47 Depression - 0.62 Multiple Sclerosis – 0.67 Breast Cancer – 0.75 General Population – 0.85 Link https://doi.org/10.1371/journal.pone.0132421 PREVIOUS PAGE NEXT PAGE

The School of Health, Victoria University of Wellington, has published a new Long COVID resource for GPs. Epidemiologist, Dr Mona Jeffreys, talked to us about how the resource was developed and how GPs can access it. < Back New Primary Health Care Resource for adults with Long COVID 19 Apr 2026 The School of Health, Victoria University of Wellington, has published a new Long COVID resource for GPs. Epidemiologist, Dr Mona Jeffreys, talked to us about how the resource was developed and how GPs can access it. Dr Mona Jeffreys, epidemiologist, and her team from Victoria University of Wellington, have recently published a new Primary Health Care Resource for adults with Long COVID for GP's. The resource was co-designed with people with lived experience of Long COVID and was funded by the Health Research Council of NZ. Mona spoke at our April Online meeting about how the resource was developed using the Standford model of Design-led Thinking. (The recording of the talk is now available on our YouTube channel.) This co-design approach ensured that patients and researchers were considered as equal partners, that lived experience shaped the content, and that the resulting tool met the needs of patients and health professionals. What’s in the Resource? The resource includes a one-page document that gives a visual overview for diagnosing and managing Long COVID in adults. It has clickable links through to detailed guidance. An additional pdf with further readings and resources is also included. Mona has said that this pdf will be easier for the university to maintain going forward, while the overview page is expected to remain static. Mona recommended that people use the Post Covid Symptom Map regularly as a way to monitor and share symptoms and severity. Key findings from the research project People reported significant impacts of Long COVID on themselves and their families, including: medical dismissal, symptoms framed as psychological, delayed diagnosis, fragmented, confusing care pathways, need to self-advocate and research with limited energy. It is clear that Long COVID affects all aspects of people’s lives. How patients changed the resource The experience of people affected by Long COVID highlighted that the resource must: Emphasise pacing, validation, and partnership. Frame mental distress as consequence not the cause. Warn against graded exercise therapy for people with post-exertional malaise (PEM). Highlight that there is no evidence that “brain retraining” can treat a physical condition. Emphasise the overlap with ME/CFS, but that other systems and hence symptoms are also prevalent. Artwork captures the lived experience Participants were invited to create artwork to explain the impact of Long COVID. This is an insightful example… "This is supposed to resemble a teardrop. That's how I feel, that I could just cry all the time. Around it are all the words that have been taken away from me, like independence, support, job, friends, GP, normal company, hospital, help, acknowledgement, compassion, activities, empathy, socialising, basic needs. The middle is me with a smiley face hoping one day my life is going to turn back round again." For Additional Info More about the project and copies of all outputs are available at www.wgtn.ac.nz/fehps/centres/health-services-research-centre/recent-projects/evidence-based-management-of-long-covid/management-of-long-covid-in-primary-care Previous Next

Testimonials Feedback received from a member in our 2023 Annual Survey “I just feel amazed that the organisation exists. I know that if I have an issue related to CFS that I cannot resolve myself, there is someone I can ask who will understand, and who may know how to get me the help. I also appreciate the kind and social nature of much of the communication; this is a health condition but it affects every domain of our lives, and so the efforts to connect and facilitate care and fun and connection even beyond the healthcare domain feel especially profound. You’d only set up your organisation that way if you understood what weird and indirect impacts this illness can have on your life, so to me the whole thing communicates understanding and an approach of 'you are welcome here'. What a beautiful thing to have when you are dealing with such a complex and overwhelming illness."

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.

Privacy notice for MECFS Canterbury MECFS Canterbury complies with the Privacy Act and the Health Information Privacy Code . If you are not satisfied with our response to any privacy-related concern you raise with us, you can contact the Privacy Commissioner . Collection and Use of Personal Information We may ask you to provide and collect personal information from you, including the following information: Name, Age, Ethnicity Contact information Interactions with us Membership status Survey responses (not linked to personal information) Consent agreements for services Health details Clinical notes and support activity We collect your personal information in order to: Stay in touch and inform you about our activities. Provide statistical summarised information to our funding providers. Provide support and services to you, and to respond to feedback and queries. With your permission, we may share relevant health information with other healthcare professionals in a confidential manner, with the aim of improving the support you receive from your healthcare team. Providing some information is optional. If you choose not to provide contact details and information about your health, we may not be able to provide you with expected services. We keep your information safe by storing it securely (password-protected electronic storage and databases) and allowing only those authorised to see it. Paper based records are shredded when no longer needed. You have the right to ask for a copy of any personal information we hold about you, and to ask for it to be corrected if you think it is wrong. If you would like to ask for a copy of your information, or to have it corrected, please contact us at info@mecfscanterbury.nz , or 03-365-5887. Collection and Use of Website Visit Information Statistical Information We may collect statistical information about your visit to this website to help us improve it. This information is aggregated and doesn’t identify you personally. It includes: Your IP address The search terms you used The pages you visited on our site and the links you clicked on The date and time you visited the site The referring site (if any) from which you clicked through to this site Your operating system, for example Windows XP, Mac OS X The type of web browser you use, such as Edge, Chrome or Mozilla Firefox Other things like your screen resolution and the language setting of your browser. The statistical information referred to above can be viewed by site administrators and certain other staff. It may also be shared with government agencies. Google Analytics We use Google Analytics on our website to track your actions and help us optimise our site for conversions and usability. While we can see data gathered over a timeframe, we do not collect personally identifying information from any source as part of the terms of service of Google Analytics. A condition of our use of Google Analytics is that we make reasonable endeavours to bring to your attention the following statement: This website uses Google Analytics, a web analytics service provided by Google, Inc. (“Google”). Google Analytics uses “cookies”, which are text files placed on your computer, to help the website analyse how users use the site. The information generated by the cookie about your use of the website (including your IP address) will be transmitted to and stored by Google on servers in the United States. Google will use this information for the purpose of evaluating your use of the website, compiling reports on website activity for website operators and providing other services relating to website activity and internet usage. Google may also transfer this information to third parties where required to do so by law, or where such third parties process the information on Google’s behalf. Google will not associate your IP address with any other data held by Google. You may refuse the use of cookies by selecting the appropriate settings on your browser, however, please note that if you do this you may not be able to use the full functionality of this website. By using this website, you consent to the processing of data about you by Google in the manner and for the purposes set out above. We have implemented Google Analytics demographic and interest reporting based on the Google Display Network in order to provide information about users that is used to optimise our website. Any data collected by Google for the purposes of Google Analytics will be treated according to Google’s Privacy Policy. If you would like to opt-out of being tracked by Google Analytics, then you can do so using the Google Analytics Opt-out Browser Add-on. Cookies This site generates persistent session cookies (that is, they have an expiry date and are removed on that date) for the purpose of monitoring site usage. The cookies don’t collect personal information. You can disable them or clear them out of your web browser without affecting your ability to use the site.

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.

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.

We are excited to announce the three winners of our 2026 Crash Wear Merch Design Competition. < Back Announcing Winners of the 2026 Crash Wear Merch Design Competition 12 Jun 2026 We are excited to announce the three winners of our 2026 Crash Wear Merch Design Competition. We are excited to announce the three winners of our 2026 Crash Wear Merch Design Competition. Each entry was unique and speaks to what ME/CFS Canterbury West Coast is all about, community, advocacy, and the lived experience of people with ME/CFS and Long Covid in Canterbury and the West Coast. The Winning Designs Rachel Rockell - Our Mission and Vision Rachel designed a blue hoodie that keeps our signature colour and logo on the front. On the back, yellow daisies sit alongside the mission and vision of ME/CFS Canterbury West Coast. Rachel chose daisies to represent friendship, joy, cheerfulness and loyalty, qualities she wants everyone who wears it to carry with them. [ Purchase Rachel's design here ] Karen Morton - Seven Spoons Karen's entry is a photograph from a larger photographic essay she is creating about Spoon Theory - the concept used by many people with chronic illness to describe living with limited and unpredictable energy. Seven blue spoons, intentionally blurred to reflect the brain fog that so many in our community live with every day. Her opening line says it simply: "I woke with only seven spoons today." [ Purchase Karen's design here ] Tamara Barker - Forget M.E. Not Tamara digitally drew a forget-me-not flower, duplicated in varying sizes and arranged into a circle, with the words Forget M.E. Not along the edge. The forget-me-not is a symbol long associated with ME/CFS, and for Tamara it represents the millions of people around the world who are missing from their lives because of this illness. [ Purchase Tamara's design here ] Take a look at all the merch options A couple of dollars from every purchase goes directly toward supporting people with ME/CFS and Long Covid in Canterbury and the West Coast so please check out our winning designs! Keywords: ME/CFS Canterbury, Crash Wear merch, ME/CFS design competition, Long Covid Canterbury, Myalgic Encephalomyelitis New Zealand, ME/CFS clothing New Zealand, Spoon Theory, ME/CFS awareness, chronic illness merch New Zealand, forget me not ME/CFS Previous Next

We exist to improve the wellbeing of people and whānau affected by ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) and Long Covid in Canterbury and the West Coast. MECFS Canterbury provides free information, validation, clinical support, connection, practical support and advocacy. Welcome to ME CFS CANTERBURY Support, advocacy and education for people affected by Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Long Covid in Canterbury and West Coast What's happening? Upcoming 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. Every meeting is an opportunity to share information and to connect with other people who understand life with a chronic illness. READ MORE How we help Our services are available to people living with ME/CFS and Long Covid who live in Canterbury and the West Coast, and also to their whānau. We operate a Registered Nurse Service to provide support with diagnosis and management, a Volunteer Outreach Service to provide limited practical help, plus more. READ MORE Updates We share news relevant to our ME/CFS community and the people who support them. This may include latest research and management guidance, updates about our organisation, and news about other services and aids that may help to improve quality of life. READ MORE Who are we? We are a community health and clinical service organisation for people affected by the debilitating illness ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) and Long Covid. We exist to improve the wellbeing of people and whānau affected by ME/CFS in Canterbury and the West Coast by providing information, validation, clinical support, connection, practical support and advocacy. We also provide education and support to health professionals and the wider community to improve the quality of care available for those affected by ME/CFS. LEARN MORE ABOUT US 1985 2791 139 ~ 0.4% Year Established People with ME in Canterbury (*estimate) People with ME in West Coast (*estimate) *Conservative estimate of 4 people in 1000 have ME/CFS pre Covid-19 A slide introduction to ME/CFS 1/11 DISCLAIMER: MECFS Canterbury does not provide recommendations for any treatments for your particular situation on this website. Any advice, either explicit or implied, is not intended to replace the qualified medical advice that is necessary for each individual. Please discuss any lifestyle and treatment changes with your doctor first. MECFS Canterbury does not accept any responsibility for any treatment undertaken by readers of any content or for any error or omission in connection with an article or content published on this website.