Tom Harris, a member of MECFS Canterbury, writes for The Spinoff and asks ‘If you get long Covid, who’s going to help?’ < Back Article in The Spinoff discussing support needed for people with long Covid 25 Oct 2021 Tom Harris, a member of MECFS Canterbury, writes for The Spinoff and asks ‘If you get long Covid, who’s going to help?’ Tom Harris, a member of MECFS Canterbury, writes for The Spinoff and asks who will provide funding and care for people with long Covid. Tom shares his experience at being a longhauler – he has ME/CFS, a multi-system neuroimmune disease that is similar to long Covid. He notes that he recently used the MECFS Canterbury nurse service and says it was "the first time in eight years of post-viral illness that I spoke with a medical professional fluent in its [ME/CFS] management." Tom continues "While I have had several very good GPs, the quirks of these illnesses benefit immensely from familiarity and expertise." He suggests that the support he has found may well be the best model for people with long Covid. But that support needs to be funded." Read Tom's article on The Spinoff: https://thespinoff.co.nz/society/25-10-2022/if-you-get-long-covid-whos-going-to-help Previous Next

The Mayo Clinic Proceedings publication has recently published a consensus recommendation article for ME/CFS written by the ME/CFS Clinician Coalition. It is exciting that another leading health care publication is sharing up-to-date evidence based information about ME/CFS. < Back Mayo Clinic releases new consensus clinical guidance for ME/CFS 4 Sept 2021 The Mayo Clinic Proceedings publication has recently published a consensus recommendation article for ME/CFS written by the ME/CFS Clinician Coalition. It is exciting that another leading health care publication is sharing up-to-date evidence based information about ME/CFS. The Mayo Clinic Proceedings publication is a premier peer-reviewed clinical journal for general and internal medicine, and is among the most widely read and highly cited scientific publications for physicians. The journal has recently published a consensus recommendation article "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management" by Lucinda Bateman et al (US ME/CFS Clinician Coalition). The lengthy article (14 pages + references) discusses diagnosis and management, and highlights: key biological impairments in ME/CFS. the need to identify/treat co-morbidities. why GET (Graded Exercise Therapy) is not recommended. the link to Long COVID. It is exciting that another leading health care publication is sharing up-to-date evidence based information about ME. Of note, this article cites research from exercise physiologist, Dr Lynette Hodges, Massey University, NZ. Author Dr. Lucinda Bateman notes, “There are many steps clinicians can take now to improve the health, function, and quality of life of people with ME/CFS, including those newly ill with ME/CFS following COVID-19. This guidance may also help Long COVID patients, even if they do not fully meet criteria for ME/CFS.” Please note that the medication section is based on the US environment, which has a large range of medications available and where clinicians are able to be more experimental with off-label prescriptions than in other countries such as NZ. For local guidance for NZ medical professionals, we recommend the NZ Doctor How to Treat: ME/CFS article. (Available https://m.e.awareness.nz/how-to-treat-mecfs .) Link: https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext 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

The 4th International Conference on ME/CFS, Long Covid and Gulf War Illness < Back ME CFS Canterbury Registered Nurses attend RID2025 12 Nov 2025 The 4th International Conference on ME/CFS, Long Covid and Gulf War Illness Our nurses Amanda Wyatt and Wendy Dragt are currently attending #RID2025 – Hosted by Griffith University NCNED it is the 4th International Conference on ME/CFS, Long Covid and Gulf War Illness in Tweed Heads, Australia. The program features leading researchers like Professor Nancy Klimas speaking about immune and viral factors in ME/CFS, Professor Maureen Hanson on plasma proteomics, Professor Sonya Marshall-Gradisnik on TRPM3 ion channel dysfunction, and Professor Warren Tate talking about epigenetic mechanisms. Also presenting are Dr Natalie Eaton-Fitch on ME/CFS and Long Covid epidemiology, Dr Jessica Maya on inflammatory subgroups, and Professor Pete Smith on autonomic and immune links plus many more. It’s an inspiring opportunity for our nurses to hear the latest biomedical research and clinical insights, and to connect with others working to improve care for people with ME/CFS and Long Covid. #myalgicencephalomyelitis #mecfs #LongCOVID   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

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 are delighted to announce that physiotherapists who have access to the Allied Healthways website provided by the CDHB now have appropriate advice available in the PhysioFITT guidance for ME/CFS. < Back New guidance from CDHB for physiotherapists 25 Jun 2021 We are delighted to announce that physiotherapists who have access to the Allied Healthways website provided by the CDHB now have appropriate advice available in the PhysioFITT guidance for ME/CFS. We are grateful to the clinical editors from the Canterbury District Health Board who have worked with us recently to provide up-to-date guidance about ME/CFS for physiotherapists working with the PhysioFITT programme. This new guidance is available on the CDHB's Allied Healthways online platform, and will help health professionals to be aware of current understanding of this debilitating illness, and the need to move away from prior advice that is no longer recommended. Under the PhysioFITT program, physiotherapists assess the clinical context of the patient and deliver a tailored assessment and activity plan appropriate to their health condition(s). Key points made for ME/CFS clients: Avoid exercise tests that may trigger post-exertional malaise (PEM). Check for Orthostatic Intolerance. Graded Exercise Therapy (GET) is not recommended for ME/CFS. Exercise should be used for physical maintenance (core strength, bone density and enjoyment) and be at a level to avoid post-exertional malaise (PEM). If PEM is experienced frequently, consider reducing rather than increasing activity in order to improve overall wellbeing. It may be more helpful to focus on daily activities than formal exercise. Make #movementforlife safe for #MyalgicEncephalomyelitis #ChronicFatigueSyndrome 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

A brief introduction to Myalgic Encephalomyelitis / Chronic Fatigue Syndrome < Back ME/CFS a Brief Introduction 19 Jan 2026 A brief introduction to Myalgic Encephalomyelitis / Chronic Fatigue Syndrome View our carousel post on facebook ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) A Brief Introduction: Living with ME/CFS can be described as a profound, life-altering shift in how a person can exist in their own body. This debilitating impact is due to a broken energy system and dysfunction at a cellular level. Unfortunately, many people with Long COVID have the same experience. ME/CFS can be triggered in a few different ways; an infection (often viral), injury, surgery or other stressor. Recently there has been a huge increase in people with ME/CFS due to the Covid 19 Pandemic. Following infection, some people have developed Long COVID and now meet the diagnostic criteria for ME/CFS. The diagnostic criteria for ME/CFS gives some insight into the lived experience: ✦ Exhaustion: A body that feels “used up” by the smallest effort. It’s exhaustion that rest doesn’t fix. ✦ Post-Exertional Malaise (PEM): This is the crash that comes after physical, mental and other exertion. The crash might arrive hours after (say) a social event, or on the next day or two. Bed rest is likely needed after a PEM crash. ✦ Sleep issues: This can be needing to sleep a lot through to never waking up feeling refreshed. ✦ Cognitive dysfunction: “brain fog” that isn’t just fog. It's being unable to process information or recall things, and more. ✦ Orthostatic Intolerance: It’s feeling worse when moving to an upright position. Standing in a queue, in the shower, or at the kitchen sink, is problematic. Many other symptoms may be involved, such as pain, gut problems, and sensitivity to light, sound, smells. ME/CFS patients are categorised into four severities based on functional capacity. MILD | MODERATE | SEVERE | VERY SEVERE ✦ Mild - At least 50% reduction in pre-illness activity level. ✦ Moderate - Mostly housebound. ✦ Severe - Mostly bedridden. ✦ Very severe - Totally bedbound and in need of care for basic functions. STOP | REST | PACE Energy and activity management to balance activity and rest is the most important part of ME/CFS management. The goal of pacing is to minimise Post-Exertional Malaise, rather than eliminate it. 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

Canterbury District Health Board's diagnostic and management information for ME/CFS has now been updated with input from MECFS Canterbury. This provides GPs in the region with evidence-based guidance and best practice. < Back New Guidance on ME/CFS for Canterbury GPs 7 Dec 2019 Canterbury District Health Board's diagnostic and management information for ME/CFS has now been updated with input from MECFS Canterbury. This provides GPs in the region with evidence-based guidance and best practice. MECFS Canterbury is excited to announce that the new CDHB (Canterbury District Health Board – now Te Whatu Ora Waitaha ) HealthPathway for ME/CFS is live - as of Friday, 29th November 2019! We have been working with the CDHB team over the last year on getting the content improved. 'HealthPathways' is a website that GPs log into to view best-practice advice for assessing and managing a wide range of health conditions and concerns. Each region /DHB has their own ‘copy’ of the system content, but the base content is provided by Canterbury. The old 'Chronic Fatigue Syndrome' Pathway has been completely rewritten. The new content is largely based on the information on the US Centers for Disease Control and Prevention site, as this is the most up-to-date and informative of the government sites around the world. (Check out www.cdc.gov/me-cfs/index.html if you haven’t already.) The new ‘Chronic Fatigue’ Pathway will help GPs to assess someone more thoroughly to confirm if they have ME/CFS, idiopathic chronic fatigue or perhaps other conditions that may have different treatment options. It also guides them to support people to manage their activity carefully. We have prepared a letter about this new information for you to take to your GP, next time you visit. We want GPs to know about the new HealthPathway so that they can support you better.” Letter re new CFS HealthPathway .pdf Download PDF • 129KB 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