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Many people living with ME/CFS live in permanent lockdown. When you move out of lockdown - and get back into a fulfilling life with a variety of choices and activities - we ask you to remember those that will stay in lockdown because they have ME/CFS. < Back ‘Years in Lockdown’ video for International ME Awareness Day, 12th May 2020 11 May 2020 Many people living with ME/CFS live in permanent lockdown. When you move out of lockdown - and get back into a fulfilling life with a variety of choices and activities - we ask you to remember those that will stay in lockdown because they have ME/CFS. For ME Awareness Day 2020 we prepared a short 2.5 minute video to highlight that many people living with ME/CFS live in permanent lockdown. When you move out of lockdown - and get back into a fulfilling life with a variety of choices and activities - we ask you to remember those who will stay in lockdown because they have ME/CFS.” https://youtu.be/vuRrh7NiknQ 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

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.

Any advice, either explicit or implied, is not intended to replace the qualified medical advice that is necessary for each individual. Disclaimer Statement ME/CFS Canterbury / West Coast does not provide recommendations for any treatments for your particular situation on this website, on our social media, or in our handouts. 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. ME/CFS Canterbury / West Coast 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, or in our other material. We have no formal relationship with the activities and organisations that we link to. Links to these activities and information are included for convenience only. The inclusion of such links does not imply endorsement by ME/CFS Canterbury / West Coast of the linked website, or its provider, products and services offered. Readers are advised to take their own appropriate due diligence steps prior to engaging with the organisations, businesses and individuals listed. ME/CFS Canterbury / West Coast is not responsible for the currency or accuracy of content on information we link to.

Our Organisation MECFS Canterbury was originally established in 1985 as a society under the Incorporated Societies Act 1908. The society's goals were to support and assist people with ME/CFS in the management of this debilitating illness and with the aim of improving their quality of life. In 2024, our organisation moved to a Charitable Trust model. The society, M.E. /CFS Group (Canterbury) Inc, was wound up and all services, staff and assets were transferred to ME/CFS Canterbury / West Coast Charitable Trust. We continue to be registered as a charity under number CC32072. We currently trade under the names MECFS Canterbury and ME/CFS Canterbury / West Coast. We have grown over the years to become a professional community health and clinical service organisation, providing a range of services and supports for our community. Visit the How we help page to find out more. We serve people in the Canterbury - Waitaha and West Coast - Te Tai Poutini regions in the South Island - Te Waipounamu of Aotearoa New Zealand. These regions include thirteen District Councils. We also support students at the Southern Regional Health School, who may live in any region of the South Island. Our Strategic Plan For 2023-2028 Determine the cooperation opportunities and geographic range of our organisation Enhance the strength of our governance and organisational framework Reach, support and retain more clients and members Support our supporters: health professionals, funders, volunteers, and others Presentations to our AGMs Our Annual General Meetings are held in November of each year. These meetings provide us with an opportunity to share an overview of our service delivery and finances for the year, and to look towards the year ahead. We invite you to watch the videos of our presentation slides from past AGMs. Annual Performance Statements Our audited Financial and Service Statements provide a detailed view of our finances, outputs and activities. If this is your thing, here they are. 2023 STATEMENTS - Not yet audited 2022 STATEMENTS 2021 STATEMENTS

Complaint Process We are committed to providing appropriate and considerate support and advocacy for people affected by ME/CFS and to providing a positive working environment for our staff. We encourage anyone to get in touch with us to let us know if anything has not gone well so that we can put things right and improve for the future. We welcome this feedback in the form of a formal complaint, or as informal comments. Our definition of a complaint: An expression of dissatisfaction from an individual or a group with the standard of support, service, actions, policy, or position of MECFS Canterbury, or our employees or volunteers. How to complain: In the first instance, please contact the person that the complaint relates to. If the matter cannot be resolved, or if you would prefer, please prepare a written description of your complaint, and send to the Manager, or if the complaint relates to the Manager, send to the Chairperson. You will find our email and postal addresses on the Contact Section of our website. What to include in your complaint: What went wrong When and where it happened Who was involved What you want from your complaint Your name, address, and contact details (telephone and/or email). Unless you wish to remain anonymous and accept that this will result in limitations on our investigation and response. You have the right to expect that: Complaints will be treated with appropriate confidentiality. Information will only be shared with people necessary to complete the investigation into the complaint and to determine our response. You will always be treated with respect. At any point, all parties have the right to have their whānau support and/or supervisors and/or advocate present in any meetings related to the complaint. What happens when you complain? The person you have raised the complaint with will discuss the complaint with you within two working days of them receiving the complaint. Please be aware that the majority of our team work part time, so there may be a delay in your complaint being received. All complaints are reported to the Manager within 24 hours of receipt. For matters involving the Manager, the complaint will be reported to the Chairperson. A formal investigation and response process will be initiated if you or the person contacted require it: We may be in touch again to ascertain further information or facts and are likely to contact any other people involved. We will tell you when we plan to come back to you with a response. An independent mediator will be engaged if needed. We will provide a full and formal response in person and/or by letter if this is appropriate or requested. Our response will detail findings of our investigation and state what actions and changes have been put in place. If the matter is significant, the complaint and response will be tabled at the next Committee meeting in a confidential manner. What happens if I am not satisfied? If we are unable to resolve your complaint, you may take your complaint to the Health and Disability Commissioner or Charities Services .

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...

Library Our library of books and limited equipment is available to members free of charge. The books in our library have been selected or donated by past and current members and supporters of MECFS Canterbury. Please note that it is not our role to endorse all books or all content of each book. CLICK TO VIEW ONLINE CATALOGUE The library includes books on evidence-based management of ME/CFS and other approaches, books about coping with long term chronic illness, and fiction related to ME/CFS as well. You can visit the library in person, but most people request that we post items out to them. We can provide you with a post paid courier bag for returning the books, and when you are ready to return the items, we can arrange for NZ Post to pick up from your home. Our Recommendations For those new to ME/CFS we recommend books by Dr Rosamund Vallings, Dr Charles Shepherd, and Dr David Bell. In particular: 'Chronic Fatigue Syndrome M.E. - Symptoms Diagnosis Management' by Dr Rosamund Vallings CLICK TO VIEW IN CATALOGUE For in-depth clinical guidance, we recommend: 'ME/CFS/PVFS An explanation of the Key Clinical Issues' by Dr Charles Shephard and updated regularly by the ME Association UK CLICK TO VIEW IN CATALOGUE Please seek medical advice: Any suggestions or advice given in any of the books in our library, should not replace medical advice, and we do not accept any responsibility for any treatment undertaken. Please discuss with your GP or health care team any changes to your treatment regime before implementing them, including the severity of your illness and any other health issues. We are all different, and unfortunately, what works for one person may not work for another. It is best to be careful. Can't find the book you want to read? Let us know if you would like us to get a book in, and we will do our best to purchase it for the library. First Name Last Name Email Message Thanks for your query! Send

Join our new facebook group for people affected my ME/CFS and Long Covid living on the West Coast < Back New West Coast Peer Support Group 3 Oct 2025 Join our new facebook group for people affected my ME/CFS and Long Covid living on the West Coast In response to requests from our community on the West Coast, we have created a new Facebook group. We hope the new private group will help people living with ME/CFS and long COVID in the West Coast region to connect and support each other, as well as share information about local events and services. It will also allow us to keep you up to date with our meetings and other initiatives in your region and provides a space for people to self-organise local social catchups. Please request to join the group by visiting www.facebook.com/groups/mecfssupportgroupwestcoast 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

There are a range of practical supports that may make a difference for you when living with a chronic illness like Look for ways to save energy or to get support with your activities of daily living. Practical Supports There are a range of practical supports that may make a difference for you when living with a chronic illness. Look for ways to save energy or to get support with your activities of daily living. We hope to grow this list over time. Please let us know if you have any suggestions of what could be included in this section. Energy Saving Devices When living with an energy limiting illness, using devices and aids that make everyday tasks easier can make a real difference. Think about the tasks that you can't do without getting sicker, or that you avoid doing, and check out if there is equipment or an aid to make this easier. Some examples of devices and aids that people tell us have made a difference: Dishwasher Robot vacuum cleaner Electric toothbrush Slow cooker Sensory aids such as earplugs, tinted glasses. Find manpower! e.g. someone to mow your lawn or do basic housework once a month. Mobility and Home Aids It is worth considering using mobility aids such as wheelchairs, canes, walkers, shower stools, to help conserve your energy. This is particularly the case if you experience orthostatic intolerance (symptoms when moving to an upright or standing position). Talk to your GP about being referred for an assessment with an Occupational Therapist, or purchase your own. We also have some equipment available to borrow. Mobility Parking Permit People with ME/CFS are often unable to walk much distance or are bed-ridden after an outing. Consider applying for a Mobility Parking Permit so that you can park in the mobility parking spaces outside shops, parks and other locations. It means you don’t have to walk so far during outings and will have more energy for the shopping or whatever you need to do. Please ask your GP or one of our nurses to complete the application form from CCS Disability Action . The cost for a 5-year permit is $50. To help you plan an outing, the Christchurch City Council has a map of where the mobility carparks are. Total Mobility Discounted Transport Scheme People with ME/CFS are entitled to discounts that give them 75% off fares with approved transport operators - up to a maximum of $70 per trip. You can also use the Total Mobility card to get 50% discount on Metro bus fares too. As at June 2024, the Total Mobility scheme is available through the following participating transport operators: Greater Christchurch - Christchurch Mobility Transfers. Blue Star Taxis, Driving Miss Daisy, First Direct, Freedom Companion Driving Services NZ Ltd (ChCh North and Rolleston), Gold Band Taxis, NZ Total Care Mobility Ltd Ashburton - Ashburton Taxis Timaru - Geraldine Community Minibus Trust, Timaru Taxis, Driving Miss Daisy Waimate - Waimate Community Vehicle Trust Applications can be made through Aspire Canterbury ($34 per annum) or talk with one of our nurses to apply through Aged Concern (one off $30 fee). Your GP or one of our nurses can sign the application form. For more info, see: Environment Canterbury Total Mobility Scheme . Total Mobility on Metro buses in Christchurch and Timaru. Online Grocery Shopping You might find that it is worth taking the time to get familiar with ordering groceries online so that they are delivered to your home or made ready for pickup at the supermarket. It saves a lot of energy and may help you to manage the rest of your week. For more information about the services and costs of online shopping see the up-to-date information from the stores: Woolworths - Pickup or Delivery Pak'nSave - Pickup only New World - Click and Collect or Delivery Fresh Choice - Pickup or Delivery at selected stores Hāpai Access Card This card is for the disabled community and it's aim is to provide the cardholder with empathetic customer service from businesses, cafes and attractions involved with the programme. Your card will indicate what barriers you may face when engaging with the community. For example, it may indicate that you cannot stand in a queue, so when you show your card they will invite you to the front. The card also provides discounts in some retail and council settings. The Hāpai Access Card costs $30 for 3 years. People can self-refer for the card and need to provide evidence of needs. Our Registered Nurse Service can also complete an application for you. Hidden Disabilities Sunflower Lanyard The sunflower is a globally recognised symbol for non-visible disabilities. Wearing a sunflower lanyard lets airport staff know that you may need a little extra help or understanding when travelling. Other businesses, such as ASB, recognise the lanyard. Please bear in mind that a sunflower lanyard will not get you through queues faster or provide a personal escort or wheelchair through airports. Talk to your airline about special assistance or the use of a wheelchair while at the airport. The Sunflower Lanyard Facilities at Christchurch Airport include lower sensory bathrooms, information desks, a quiet pod, and a quiet seating area. We normally have supplies of the Sunflower Lanyards provided by Christchurch Airport or you can order directly from them.