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.

What is ME/CFS? Myalgic Encephalomyelitis / Chronic Fatigue Syndrome is a serious long-term, complex, multi-system illness. It affects people’s ability to do everyday tasks. Researchers have found that people with ME/CFS have: an abnormal physiological response to activity, altered immune function, impaired energy production, and changes in gut bacteria. People with ME/CFS experience a range of symptoms and these can be worsened by any kind of effort or activity. ME/CFS affects people of all ages, ethnicities, and genders. Conservatively, it is estimated that there are more than 20,000 people affected in New Zealand (4 in 1,000). We estimate that there are at least 2,661 people in Canterbury with ME/CFS, including 362 children and young people. This number will grow as a result of the Covid-19 pandemic. How do I say Myalgic Encephalomyelitis? It helps to break it up into small syllables… My–al-gic En–ceph–a–lo–myel–i-tis Possible Causes The causes and the specific pathologies of ME/CFS are not yet understood – there just hasn’t been enough research done. ME/CFS most often starts after an infectious illness such as glandular fever or Covid-19. Other factors may also be involved for some people: family genetics, environmental toxins, physical trauma (such as a car accident or surgery), and stress (physical, mental or emotional). Some people develop ME/CFS gradually. For others, it develops suddenly after the triggering event. Diagnostic Criteria (IOM 2015) Three primary symptoms are required for diagnosis : Greatly lowered ability to do activities that were usual before the illness: This drop in activity level occurs along with fatigue and must last six months or longer (3 months in children). Worsening of symptoms after physical or mental activity that would not have caused a problem before the illness: This is known as Post-Exertional Malaise (PEM). PEM is often delayed, typically happening 24-48 hours after exertion. Some people describe PEM as feeling like they have the flu. People may be house-bound or even completely bed-bound, especially during PEM. Sleep disturbance: People with ME/CFS do not feel refreshed after a full night’s sleep. At times, people with ME/CFS may have trouble falling asleep or staying asleep, may sleep for over 12 hours a day or need daytime naps, or may have a delayed sleep onset . In addition, at least one of the following symptoms are required : Problems with cognition: Most people with ME/CFS have trouble thinking quickly and concentrating for periods of time compared to prior to illness onset; there may be trouble finding words or slurring of speech, particularly during PEM. Orthostatic Intolerance: This is a worsening of symptoms while standing or sitting upright: This includes feeling lightheaded, dizzy, weak, or faint. There may be vision changes like blurring or seeing spots. GETTING DIAGNOSED Additional Symptoms Other common symptoms : These may be presen t but are not diagnostic. Chronic pain or fibromyalgia Tender lymph nodes in the neck or armpits Digestive issues like nausea, heartburn, diarrhoea, constipation, abdominal pain Muscle pain and aches and rapid muscle tiring Joint pain without swelling or redness Headaches, either new or worsening Nerve pain, felt as stabbing, burning, tingling, pins and needles A sore throat that happens often Chills and night sweats Allergies and sensitivities to foods and medications Sensitivity to chemicals, odours, light, noise, and other sensory inputs Comorbid Conditions It is not uncommon for people with ME/CFS to have other overlapping health conditions, including: Fibromyalgia, Irritable Bowel Syndrome (IBS), Postural Orthostatic Tachycardia Syndrome (POTS), allergies and chemical sensitivities, and Ehlers-Danlos Syndrome (EDS). PREVIOUS PAGE NEXT PAGE

Intervention Fund We operate a small semi-urgent Intervention Fund to support members in times of escalated need when they have no way to cover a critical cost themselves or from elsewhere. The support provided varies and may cover a voucher for food, one-off cleaning prior to a house inspection, an initial appointment with a counsellor, or the fee for a visit to GP or other health professional. We may not have funding to consider all requests, but please do enquire. We may be able to find some other way to cover the cost, if we cannot do so ourselves. To access this service: If you are already working with one of our Nurses or Advocates, please get in touch with them and explain what your needs are. They will explore options with you and then, if necessary, refer your situation to the Manager for consideration. Alternatively, members are invited to email the office directly to request support. CONTACT US

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."

Announcing updated information about Myalgic Encephalomyelitis /Chronic Fatigue Syndrome on the Healthinfo site for people living in Canterbury. This provides clear, reputable guidance from the CDHB about ME/CFS that will raise understanding and awareness. < Back New public guidance from CDHB on ME/CFS 10 Sept 2020 Announcing updated information about Myalgic Encephalomyelitis /Chronic Fatigue Syndrome on the Healthinfo site for people living in Canterbury. This provides clear, reputable guidance from the CDHB about ME/CFS that will raise understanding and awareness. Announced today! Updated information about Myalgic Encephalomyelitis /Chronic Fatigue Syndrome on the Healthinfo site for people living in Canterbury. MECFS Canterbury was proud to assist the CDHB with the update of this info. The content on HealthInfo provides clear, reputable information that people with ME/CFS can refer to for themselves, and also share with their friends, whānau and workplaces to raise awareness and understanding. It reflects the content on the HealthPathways platform and outlines the symptoms of ME/CFS, diagnosis method, self-care suggestions, treatments, and other supports available. To view, visit: www.healthinfo.org.nz/Chronic-fatigue-syndrome-CFS.htm Alternatively, view the Home page of the Healthinfo site at www.healthinfo.org.nz and use the search box at the top right to find the 'ME/CFS' topics. "HealthInfo is a health information website for the general public, funded by the Canterbury District Health Board. The information on HealthInfo is specific to Canterbury, New Zealand. It's written and approved by local ... healthcare professionals." "The website has a mix of health information, including factsheets on different topics and descriptions of local health services and support organisations. It also has links to recommended websites for further reading and research." "When you read information on HealthInfo, you can feel confident that this is the information your medical professional wants you to read." Previous Next

Crash Wear is a collection designed with the ME/CFS community at heart - whether you live with it, care for someone who does, or advocate for awareness. Wear your story. Support your community. < Back Launch of our Crash Wear merch range 18 Jul 2025 Crash Wear is a collection designed with the ME/CFS community at heart - whether you live with it, care for someone who does, or advocate for awareness. Wear your story. Support your community. We're so excited to launch our official ME/CFS Canterbury merch range! Crash Wear is a collection designed with the ME/CFS community at heart - whether you live with it, care for someone who does, or advocate for awareness. From soft, sensory-friendly loungewear to bold minimalist accessories, every piece makes a quiet but powerful statement. Whether you're pacing in a hoodie, resting with a cup of tea, or advocating from bed with a statement pillowcase, each item helps support our local work for people with ME/CFS and Long Covid right here in Canterbury and West Coast. We receive a small amount from every sale, and 100% of that goes directly to our advocacy, support, and awareness efforts. So, when you buy something, you're helping to make a real difference. Crash Wear - made to be lived in, rested in, and seen in. Wear your story. Support your community. https://mecfscanterbury.digitees.co.nz/ Previous Next

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

Thank you to the individuals and funders who have supported our journey since we became a charity in 1985. < Back It’s our 40th Ruby Anniversary! 1 Nov 2025 Thank you to the individuals and funders who have supported our journey since we became a charity in 1985. People often tell us that our charity is the only health service that has understood their life with debilitating chronic illness and provided appropriate clinical, lifestyle, social and other supports. I was overwhelmed, unsure where to start, and felt like no one really understood what I was going through. The support I received here changed that. You helped me feel seen and supported at a time when I was struggling to advocate for myself. A response in our 2025 Survey. We welcome donations to mark this occasion and to enable us to continue to support our vulnerable chronically ill community over our 41st year. Are you able to join our Ruby Crew ? In the last year alone... 277 people enrolled in our Registered Nurse Service to receive support for diagnosis, symptom management, and advocacy. 74 people supported by our advocates to explore the financial assistance available to them from Work and Income NZ. 45 group meetings held around our region to provide connections and education. 574 members: people receiving our updates or engaging with our services in some way. 631 subscribers of our newsletter, including professionals. 8 educational events and material delivered for professionals supporting our community. $0 received from the government’s health budget. We invite you to share this campaign to spread the word. Thank you! Ways to donate: Visit www.givealittle.co.nz/org/mecfs-group-canterbury-inc Use our donation form to pay by debit, credit card, or Google Pay www.mecfscanterbury.nz/donation-form Purchase something from our Crash Wear Merchandise range www.mecfscanterbury.digitees.co.nz Visit www.mecfscanterbury.nz/donate for other ways to contribute For more information about us visit www.mecfscanterbury.nz/how-we-help Link to Disclaimer: www.mecfscanterbury.nz/about-us/disclaimer Previous Next

We invite you to watch Nurse Wendy Dragt’s talk about Orthostatic Intolerance (OI) and its Management – now available on our youtube channel < Back Orthostatic Intolerance and its management Presentation 1 Sept 2025 We invite you to watch Nurse Wendy Dragt’s talk about Orthostatic Intolerance (OI) and its Management – now available on our youtube channel We invite you to watch Nurse Wendy Dragt’s talk about Orthostatic Intolerance (OI) and its Management – now available on our youtube channel https://youtu.be/HSj8zcK7XK0 OI is a common symptom in # MECFS, Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. There are various types including #POTS (Postural Orthostatic Tachycardia Syndrome), #NMH (Neurally Mediated Hypotension) and low Orthostatic Intolerance. This presentation covers: ✦ Definition and background ✦ Patho physiology – what’s going on? ✦ Diagnosis ✦ Management ✦ Resources This recording provides useful information for people with ME/CFS, POTS, or NMH, their health team, and whānau. At 62 minutes long, you may need to take some breaks and watch it over a couple of sessions. Expand the description for the video on YouTube to access the pdf of the slide deck and a timestamped list of the slides, plus more. ___________________________ DISCLAIMER: Please note that ME/CFS Canterbury / West Coast does not recommend any treatments for any individual. Any advice, either explicit or implied, is not intended to replace qualified medical advice. We do not accept any responsibility for any treatment undertaken by readers of any articles or other content, or for any error or omission in connection with any content published on our social media. ME/CFS Canterbury / West Coast is not responsible for the accuracy of content that we link to. The inclusion of such links does not imply endorsement by ME/CFS Canterbury / West Coast. Previous Next

We are looking for another part time Work and Income Advocate to join our team. < Back Work and Income Advocate Vacancy 23 Apr 2026 We are looking for another part time Work and Income Advocate to join our team. We are looking for another part time Work and Income Advocate to join our team. Could you help us to make a difference for people with ME/CFS and long COVID? Or do you know someone who might? ____________________________ About #MECFS : ME/CFS is a serious long-term illness. People living with ME/CFS experience a fluctuating severity of symptoms and are severely impacted in the activities of daily living. Appropriate clinical support and guidance for self-management can improve symptoms and quality of life. ____________________________ About Us: ME/CFS Canterbury / West Coast Charitable Trust is a growing community health organisation and charity. We focus on improving the lives of people living with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome and #longCOVID and their whānau, by providing information, validation, clinical support, connection, practical support and advocacy. We also provide educational opportunities and guidance about ME/CFS for health professionals. We deliver our services in Canterbury and the West Coast of New Zealand. Visit our website www.mecfscanterbury.nz to find out more. ____________________________ For details about the vacancy: ✦ Ad on TradeMe - https://www.trademe.co.nz/a/jobs/healthcare/community-social-services/canterbury/christchurch-city/part-time/listing/5895976604 ✦ Closing Date: 8am Wednesday 6th May 2026 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