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We invite you to watch Nurse Wendy Dragt’s talk about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and its Management – recording now available on our youtube channel. < Back ME/CFS and its Management Presentation 8 May 2025 We invite you to watch Nurse Wendy Dragt’s talk about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and its Management – recording now available on our youtube channel. We invite you to watch Nurse Wendy Dragt’s talk about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and its Management – now available on our youtube channel https://youtu.be/s8MV6lisdmM This presentation covers: ✦ What we know about ME/CFS ✦ The diagnostic criteria for ME/CFS ✦ Impacts and severity spectrum ✦ Key management principles and approaches ✦ How to make a meaningful life This recording provides useful information for people with ME/CFS, their health team, and whānau. At 69 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. 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

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

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

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

Our Health Partners Since 2019, we have met regularly with managers at Te Whatu Ora (formerly CDHB, Canterbury District Health Board) to raise awareness of ME/CFS, discuss our services, develop educational opportunities for health professionals, and ensure that people with ME/CFS have access to standard services from the health sector when entry criteria is met. We have worked with the clinical editors of the HealthPathways, Allied Healthways and HealthInfo websites during this time to provide evidence-based information for medical professionals, allied health professionals and the public. As a result of our education programme and partnership with Te Whatu Ora - Waitaha (Health New Zealand - Canterbury), we have observed that more General Practitioners are comfortable assessing, diagnosing, and supporting people with ME/CFS. HealthPathways HealthPathways is a website that offers clinicians locally agreed information to make the right decisions together with patients, at the point of care. The guidance for ME/CFS is based on the IOM 2015 diagnostic criteria promoted by the CDC. Let your GP know that there is clinical guidance for ME/CFS on Health Pathways or give them a copy of our letter about it. HealthInfo HealthInfo is a health information website for the general public in parts of the South Island. 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. The information about ME/CFS on HealthInfo can be found here . Allied Healthways The Allied Healthways website provides guidance for allied health professionals such as physiotherapists, occupational therapists, pharmacists and psychologists. Pathways provide clear and concise guidance for assessing and managing a patient with a particular symptom or condition. Information about ME/CFS is included in the PhysioFITT programme and Chronic Fatigue topics. Our Funding Partners What we do is only made possible by the community trusts, gaming trusts, government agencies and individuals who have contributed financially over recent years to the operation of MECFS Canterbury. Please accept our gratitude for helping us to make a difference for our local ME/CFS community. Air Rescue Community Services COGS - Community Organisation Grants - Christchurch The Jansen Trust Mainland Foundation Rano Community Trust The Trust Community Foundation Aotearoa Gaming Trust COGS - Community Organisation Grants - West Coast Kiwi Gaming Foundation NZ Community Trust Rata Foundation Trillian Trust Christchurch Casino David Ellison Charitable Trust The Lion Foundation One Foundation Riccarton Rotary Trust Aoraki Christchurch City Council - Strengthening Commuunities Grant Grassroots Trust Lotteries Community Canterbury Pub Charity Roy Owen Dixey Trust West Coast Community Trust And individuals who support us with private donations Our Business Partners We are grateful to the companies who support us with discounted software or services.

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 6 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

Buy from us Crash Wear 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 the 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. VISIT OUR CRASH WEAR STORE Trade Me store We sell a range of donated and fundraiser items on TradeMe, thanks to donors and volunteers. You may find something of use to you? VIEW OUR TRADEME LISTINGS ME/CFS Awareness Pins Wearing an enamel pin can be a great way to start a conversation about ME/CFS, to talk about the work of our charity, or to share some of your journey with the illness. We have three styles available to be worn at any time, but particularly around World ME Day on 12th May each year. Order from our office. Cost is $5 per pin and to post out to you. Our bank account is with Westpac 03-0802-0060232-000. Our legal name is 'ME/CFS Canterbury / West Coast Charitable Trust'. Blue Ribbon awareness Pin Forget Me Not single flower Pin Forget Me Not flower cluster Pin

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

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 2682 132 ~ 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.

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

The Allied Healthways website provides allied health professionals with guidance for a range of health conditions and concerns. The website now includes up to date information about ME/CFS. < Back New guidance for ME/CFS from CDHB for allied health professionals 22 Dec 2020 The Allied Healthways website provides allied health professionals with guidance for a range of health conditions and concerns. The website now includes up to date information about 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, occupational therapists, social workers, and other allied health professionals. 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. Key points: Graded Exercise Therapy (GET) is not recommended for ME/CFS and may cause harm. Exercise can be used for physical maintenance (core strength, bone density and enjoyment) but needs to be at a level that avoids post-exertional malaise (PEM). Cognitive Behavioural Therapy (CBT) is no longer recommended as a treatment for ME/CFS as there is no evidence of specific benefit for ME/CFS. However, counselling may assist patients with adjustment to living with a debilitating chronic illness. Provide support for 'pacing' activities. The aim is to reduce physical and mental activity to a level that can be sustained without triggering post-exertional malaise (PEM). Make #movementforlife safe for #MyalgicEncephalomyelitis #ChronicFatigueSyndrome Previous Next