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When living with chronic illness it is natural to grieve the losses and find it difficult to cope with at times. < Back Mental Health Awareness Week 5-12 October 2025 5 Oct 2025 When living with chronic illness it is natural to grieve the losses and find it difficult to cope with at times. View our campaign on our facebook Five ways to support mental wellbeing for ME/CFS We need to acknowledge that it is incredibly challenging living with a disabling chronic illness like ME/CFS. It can significantly reduce options and quality of life. It is natural to grieve the losses and to find it difficult to cope with at times, especially for those who are very unwell and not receiving much support. If you live with ME/CFS or long COVID we suggest the following strategies to support your mental wellbeing. If you have whānau affected by ME/CFS, we invite you to let them guide you on how you can support them to explore these strategies. ✦ Prioritise rest. Take regular rest breaks throughout the day. Rest before and after activities. Rest as soon as you notice symptoms increasing. ✦ Simplify. Prioritise what to spend your limited energy on. Find ways to do things that use less energy. ✦ Connect. Allocate time for friendships with people who understand or care. Join an online community of people who can relate to your experiences of chronic illness. ✦ Look for joy. Schedule in small activities or pastimes that you enjoy or that add lightness. ✦ One moment at a time. Acknowledge the challenges. Be patient with yourself. Practice gentle self-care. __________ . Need help now? Call/text 1737 (NZ) for free counselling support. Visit: mecfscanterbury.nz/living-with-me-cfs/mental-wellbeing for support options Disclaimer: https://www.mecfscanterbury.nz/about-us/disclaimer 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

Online Community We invite people affected by ME/CFS and Long COVID throughout the South Island to join our peer support group on Facebook to share information and experiences, and to support each other. We welcome both formal members of MECFS Canterbury and non-members to join the community there. You will be asked several questions prior to joining, including your commitment to adhering to our Rules for the Facebook Group – we want to provide a safe place for everyone in our regional ME/CFS community. We also host a Facebook group for those who live on the West Coast, to help facilitate local connections, information sharing, and social catchups. JOIN THE SOUTH ISLAND ONLINE COMMUNITY JOIN THE WEST COAST ONLINE COMMUNITY

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 16 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

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! 31 Oct 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

Announcing updated guidance for clinicians in Canterbury and West Coast from Health NZ. We encourage health professionals who have access to HealthPathways to become familiar with the extended guidance for diagnosis, treatment and management of this debilitating condition. < Back New clinical guidance for ME/CFS on HealthPathways 12 May 2025 Announcing updated guidance for clinicians in Canterbury and West Coast from Health NZ. We encourage health professionals who have access to HealthPathways to become familiar with the extended guidance for diagnosis, treatment and management of this debilitating condition. 'HealthPathways' is an online system from Health NZ that GPs log into to view best-practice clinical advice for assessing and managing a wide range of health conditions and concerns. There is often standardised national content for a topic, with each region then providing local information to reflect local supports and services on the regions own view of the HealthPathways. We are excited to announce that the HealthPathways team published updated guidance for #MECFS (#MyalgicEncephalomyelitis / #ChronicFatigueSyndrome ) on the Canterbury Community HealthPathways website on 12th March 2025. This information is also available to GPs on the West Coast of NZ. The pathway includes current evidence-based best-practice clinical advice for health professionals. The update includes: • More information on criteria to help with diagnosis. • More information about assessing and supporting patients with severe ME/CFS. • Extended management guidance for specific symptoms. We encourage health professionals who have access to HealthPathways to become familiar with the extended guidance for diagnosis, treatment and management of this debilitating condition. Link: https://canterbury.communityhealthpathways.org/44978.htm Please reach out to MECFS Canterbury to access the latest research summaries and other guidance, or to assist you in other ways. ____________________________ 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. Click on this link to view and download the letter in our google drive... https://drive.google.com/file/d/19hkC_DkT4-7C0y2ALhgFFauTf9LZ6DR-/view?usp=drive_link ___________________________ FURTHER READING: To find out more, we recommend: ✦ For patients: www.healthinfo.org.nz/Chronic-fatigue-syndrome-CFS.htm ✦ Guidance from us: https://www.mecfscanterbury.nz/living-with-me-cfs ✦ CDC (USA): https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html ✦ NICE (UK): https://www.nice.org.uk/guidance/ng206 ✦ Mayo Clinic (USA): https://www.mayoclinicproceedings.org/article/s0025-6196(23)00402-0/fulltext ___________________________ DISCLAIMER: Please note that MECFS Canterbury does not recommend any treatments. 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. MECFS Canterbury is not responsible for the accuracy of content that we link to. The inclusion of such links does not imply endorsement by MECFS Canterbury. Previous Next

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

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

Gillian Watson, an MECFS Canterbury member, recently sat down with Oliver Lewis from stuff.co.nz and detailed her experiences with the ME/CFS. Being told to keep pushing was detrimental. < Back Christchurch chronic fatigue sufferer told it was all in her head 6 Dec 2019 Gillian Watson, an MECFS Canterbury member, recently sat down with Oliver Lewis from stuff.co.nz and detailed her experiences with the ME/CFS. Being told to keep pushing was detrimental. Gillian Watson recently sat down with Oliver Lewis from stuff.co.nz and detailed her experiences with the ME/CFS. "I was told it was all in my head so I kept pushing. Which is the worst thing you can do with Chronic fatigue syndrome. I did a degree in chemical engineering so I am, well I was, a smart cookie. I used to deal with complex analytical data in my work. I went from that to barely being able to budget at home." "Chronic fatigue syndrome isn't necessarily a degenerative disease but it can be if you keep pushing. And I believe that I wouldn't necessarily have the degree of difficulty I have with speaking and my mobility issues today if I'd got that message much sooner." Thank you Gillian for sharing some of your story with this debilitating illness. https://www.stuff.co.nz/national/health/117957344/christchurch-chronic-fatigue-sufferer-told-it-was-all-in-her-head Previous Next

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

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 28 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.