Subscribe to our Newsletter Sign up to become a member to receive our bi-monthly newsletter. The newsletter includes information about managing and living with ME/CFS, latest research, our activities, plus more. BECOME A MEMBER VIEW OUR NEWSLETTERS Latest News We plan to share key updates about ME/CFS, Long COVID, and our organisation here. If you remember seeing a notice about new guidance or initiative in our newsletter or social media and want to revisit the details, it will be worth checking the updates listed below. 25 Aug 2026 Our August 2026 newsletter is now available! Theme for this issue is responses in our annual survey. We also highlight some new guides for Ehlers-Danlos Syndrome and Dysautonomia Read More 8 Jul 2026 ‘I feel trapped’: 29-year-old Wellington woman hasn’t left upstairs bedroom for four months Paddy Gower Does Stuff: Woman hasn’t left upstairs bedroom for months Read More 29 Jun 2026 Our June 2026 newsletter is now available! Theme for this issue is Manual Vagus Nerve Stimulation. Read More 24 Jun 2026 2026 Annual Survey – Open Now Your feedback shapes what we do... Read More 22 Jun 2026 Find Support After an ME/CFS or Long Covid Diagnosis in Canterbury and the West Coast Being told you have Myalgic Encephalomyelitis (ME/CFS) or Long Covid can feel overwhelming and isolating. Read More 12 Jun 2026 Announcing Winners of the 2026 Crash Wear Merch Design Competition We are excited to announce the three winners of our 2026 Crash Wear Merch Design Competition. Read More Load More

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

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. 2025 STATEMENTS 2024 STATEMENTS 2023 STATEMENTS 2022 STATEMENTS 2021 STATEMENTS

Dysautonomia often appears invisible, but it has a significant impact on daily life. < Back October is Dysautonomia Awareness Month 9 Oct 2025 Dysautonomia often appears invisible, but it has a significant impact on daily life. October is Dysautonomia Awareness Month. Many people with ME/CFS also live with Dysautonomia.  Dysautonomia is an umbrella term for a number of conditions that affect the autonomic nervous system (ANS). The ANS controls functions our bodies should regulate automatically, such as heart rate, blood pressure, and digestion. Some of the Dysautonomia conditions are: Orthostatic Intolerance (OI), Postural Orthostatic Tachycardia Syndrome (POTS), Inappropriate Sinus Tachycardia (IST), Neurocardiogenic Syncope (NCS) / Vasovagal Syncope, Orthostatic Hypotension, Multiple System Atrophy (MSA), Familial Dysautonomia and Pure Autonomic Failure (PAF). This can mean: Rapid heart rate when standing  Problems with temperature regulation Needing to sit or lie down to avoid fainting, headaches, nausea and other symptoms Feeling worse in the heat Needing to pace carefully to avoid crashes Dysautonomia often appears invisible, but it has a significant impact on daily life. Raising awareness is the first step to better recognition, care, and support. MANAGEMENT APPROACHES: OI symptoms are one of the most treatable symptoms associated with ME/CFS and it is usually possible to increase functional capacity through the following management approaches: Increase blood volume by drinking water and consuming more sodium (if safe for you to do so). Provide mechanical support by using compression garments and postural counter manoeuvres (movement that moves the blood up the legs to the heart). Make lifestyle adjustments such as avoiding overheating, alcohol, large meals. Introduce movement or gentle exercise done in a lying down or recumbent position first. #DysautonomiaAwareness #MECFS #InvisibleIllness #POTS ___________________________ FURTHER READING: To find out more, we recommend: https://www.dysautonomiainternational.org Recording of our OI Presentation https://youtu.be/HSj8zcK7XK0?si=dgvFt_RuzUHcYhRI https://www.cdc.gov/me-cfs/media/pdfs/2025/06/CDC-Dysauto-MECFS-Dec-4-2024-Alt-Text-Final.pdf https://healthify.nz/health-a-z/p/postural-orthostatic-tachycardia-syndrome-pots ME/CFS Canterbury West Coast Disclaimer Previous Next

Bequest A gift of any size in your Will, can increase quality of life for many people affected by ME/CFS and Long Covid. MECFS Canterbury recommends talking to a solicitor to write or update your Will. They will require our registered charity number to ensure your gift goes to the right place. Before getting in touch with them, you could start thinking about how you would like to give. You may want to consider giving a: Residual gift After providing for your family and loved ones, you can gift the remainder of your estate, or part of it, to MECFS Canterbury. Percentage You could divide your estate between a number of people and charitable organisations by allocating a percentage to each one. Specific gift This could be a specific sum, jewellery, real estate, shares or anything else you possess. You will also need this information: Our registered address is MECFS Canterbury, PO Box 10090, Phillipstown, Christchurch 8145. Our registered charity number is CC57086. If you would like any further information, or if you would like to talk to our Manager in confidence, please call 020 4091 9153, or email info@mecfscanterbury.nz . Please let us know of your intentions It would be very helpful for us if you let us know your intentions. Leaving a gift to us means a lot and we would like to be able to thank you for this. CONTACT US On behalf of our ME/CFS community, thank you for your consideration.

Volunteer Our volunteer team makes a huge difference to the support and services that we can offer people impacted by ME/CFS. We have volunteers who visit clients to provide practical supports such as housework and gardening tasks, walking dogs, assisting with filling forms and IT issues. Other people write articles for our newsletter or assist with our events and services in other ways. To sign up as a volunteer: We often have specific vacancies listed on the Volunteer Canterbury website for you to browse through. VIEW OUR VOLUNTEER VACANCIES ON VOLCAN Alternatively, please fill out our ‘Volunteer Expression of Interest’ form. We will be able to match you with people in need based on your location and the tasks you are willing to help with. FILL OUT OUR VOLUNTEER FORM For existing volunteers: After each client visit, please use the Outreach Event Form linked to below, to let us know what support was provided and when. There is also space to indicate future plans and to provide feedback. Remember to bookmark the website address so it can be found easily after each visit. Thank you for being involved in such a practical way with our community! COMPLETE OUTREACH EVENT FORM

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

Building a trusting relationship with your doctor is an important part of any illness management plan. This is especially the case when you have a complex and long-term illness like Myalgic Encephalomyelitis /Chronic Fatigue Syndrome and may also have other comorbidities. Working with your Doctor Building a trusting relationship with your doctor is an important part of any illness management plan. This is especially the case when you have a complex and long-term illness like Myalgic Encephalomyelitis /Chronic Fatigue Syndrome and may also have other comorbidities. ME/CFS can be a challenging illness for doctors. They may not have received any training in ME/CFS, nor be aware of the current clinical guidance. Also, ME/CFS can present differently in each person and there are limited treatments available. This situation can lead to frustration for both the doctor and the patient. An informed GP with a good understanding of your situation, may be able to refer you to other health services and can provide medical evidence for a range of financial supports from Work and Income and information for employers. We have put together some tips that may help you to partner with your doctor, to share the lived experience, and to ensure that the doctor is aware of current and emerging evidence-informed practice. Open our 'Working with your Doctor' handout The Healthify website also has advice for making the most of health care provider visits in New Zealand www.healthify.nz/hauora-wellbeing/h/healthcare-provider-visits . Clinical Advice for GPs about ME/CFS '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. Ask your health professionals if they have read the ME/CFS topic on HealthPathways recently, as it includes current best-practice clinical advice, based on the IOM 2015 diagnostic criteria and management guidelines from NICE , CDC , Mayo Clinic and ME/CFS expert clinicians. The shorter, public version of the advice can be viewed at www.info.health.nz/health-topics/conditions-treatments/brain-and-nerves/chronic-fatigue-syndrome . To encourage your health team to check it out, we have prepared a letter about the ME/CFS HealthPathway . Print this out, or send them the link, or email our office if you would like a copy of the letter posted out to you to take to your next GP appointment. Your doctor may also be interested to view the excellent 96 page 'Clinical Care Guide: Managing ME/CFS, Long COVID, & IACCs' from Bateman Horne Centre , USA, who are leading international ME/CFS clinicians. Also see our links for health providers . Forms to help you plan for an appointment A planning sheet allows you to write down what you want to share and how you want to say it, and also, to take notes about what is said in the appointment. We suggest using one of the following templates (these are not ME/CFS specific) to get your thoughts and priorities organised before your appointment: The single page Preparing Information for your Doctor Appointment template from Emerge Australia, a ME/CFS charity. This form provides space for you to write your goals and questions for this appointment, some notes about follow-up from your previous appointment, and more. The Appointment Day template set (7 editable pdf templates) is a non-ME/CFS specific set of single-page forms available for free from BeforeMyVisit.com, an AI health platform based in Ireland. Take a look and see if you would find any of these useful. They also have an AI tool that you might want to try out. The Health Quality & Safety Commission, NZ, also has a two-page Plan for your next Health Care Visit sheet which is available in different formats and languages . Forms for making your illness more visible There are a variety of forms and tools available to make the symptoms and impact of living with chronic illness more visible to your health team. Think about what you want to share… Is it your reduced capacity to do things, or what your symptoms are, or both? FUNCAP The Functional Capacity Questionnaire was developed for people who experience post-exertional malaise. It comes in two question lengths (55 and 27) to document your functional capacity, support needs, and loss of independence for a range of activities... personal hygiene and basic functions, walking and moving around, being upright, activities in the home, communication, activities outside your home, reactions to light and sound, and concentration. There is an online version of FUNCAP55 which generates a pdf of your results. For iPhone users, there is a FUNCAP27 app. For others, print the FUNCAP27 pdf and calculate your own results. A research article was published in 2024 to document why and how the questionnaire was developed. Long COVID For people with Long COVID, the two-page Post COVID Symptom Map, developed by Physiotherapy New Zealand for Ministry of Health, highlights symptom severity and functional disability. Bateman Horne Centre Forms The single-page editable Good Day Bad Day Questionnaire from Bateman Horne Centre has ten questions for you to answer to highlight your range of function on baseline/good days and PEM/crashed/bad days and your hours of upright activity (HUA). BHC also has a Health Assessment worksheet to note symptom scores, hours of upright activity, pain areas and appointment priorities. Both forms have been developed for ME/CFS and related chronic illness. Emerge Australia Forms The single-page Symptom Severity and Severity Hierarchy Profile from Emerge Australia allows you to identify your symptoms, their severity and your priority in having them addressed. They also have a Sleep and Pain Profile form. Both forms have been developed for ME/CFS and related chronic illness. Basic ME/CFS Diary Our Activity and Symptom Diary allows you to monitor and log your activity, biometrics, and symptoms over 7 days. This may help you and your health team to identify what triggers post-exertional malaise for you and what your activity baseline and pacing needs are. Generic Symptom Severity Scale Form The two-page editable Symptom Severity Scale from Care Patron is not ME/CFS specific. It includes space to rate and describe your symptoms and their impact. Finding a new GP There are services around the region that can assist you with finding a local General Practitioner and other services. Ask them to recommend a GP who is taking new patients and supports and understands your health conditions: Tautoko Hauora in Canterbury Arowhenua Whānau Services in South Canterbury. West Coast Health for the West Coast. The national www.healthpoint.co.nz website also has a search function to find local and online services. Pegasus Health in Canterbury also provides useful advice about finding Your Best Care | Choose your best health care option . It can be useful talking to other people living with the same health conditions about the health professionals that they have found helpful. My Health Passport My Health Passport is a booklet where you can write down information about how you want people to communicate with you and support you when you receive a health or disability service, including when you visit a medical centre or the hospital. It is not a tool to help doctors diagnose or monitor patients, nor a substitute for a patient’s medical records. But it can be a useful way to get key information across, especially at a time when you may not be cognitively present to communicate well. We have some A5 hard copies which we can provide to members. Please email us to post out to you, or you can pick up at a group meeting. Alternatively, you can download from the Health and Disability Commissioner website. They even have editable pdf versions, which you could edit and then print, or keep on your phone.

About ME/CFS Myalgic Encephalomyelitis /Chronic Fatigue Syndrome WHAT IS ME/CFS GETTING DIAGNOSED DIAGNOSTIC CRITERIA SEVERITY ME/CFS AND LONG COVID

Work and Income Advocacy When we live with or care for someone with a debilitating chronic illness like ME/CFS, we may be unable to work to generate income for ourselves and our families. Depending on our family situation, other income and assets, there may be some income support available from Work and Income, a department of the Ministry of Social Development (MSD). We know it can be difficult working through the information and the application steps. To see a summary of relevant payments and how to access it on the Work and Income Assistance page in our Living with ME/CFS section of this website. You can also be connected to the advocates in our Work and Income Advocacy Service . They provide confidential support to people affected by ME/CFS and will help you to access any assistance that you are eligible for from Work and Income. This service is normally delivered through email, but it depends what suits you best - text, phone call, zoom call or home visits are also an option. The support may include: Helping to determine your eligibility for the different financial benefits and allowances. Assisting in filling out paperwork and applications. With your permission, acting on your behalf as your agent. Working with your GP to ensure any required medical certificates reflect the severity and impacts of your illness. Supporting you through issues with Work and Income. Advocating on your behalf with Work and Income. To access our Work and Income Advocacy Service: Please be aware that our services are only available to people in our region affected by ME/CFS or Long Covid, or those who are currently exploring this diagnosis. If that is not you, please contact Beneficiary Advisory Services (800 000 043 or office@bas.org.nz ) if you live in Christchurch or the Waimakariri District, or find your local service on the Community Law website. To refer yourself to our Work and Income Advocacy Service for people affected by ME/CFS, sign up as a member and note on the form what help would be beneficial, and one of our team will be in touch. FILL OUT OUR MEMBERSHIP FORM CONTACT US If you are already a member, send us an email about the help you are needing.

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 65% off fares with approved transport operators - up to a maximum of $40.95 per trip. You can also use the Total Mobility card to get a $1 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 Some operators not only provide transport but can also be booked to support you at appointments and events. We understand that the drivers from Total Care Mobility and Driving Miss Daisy can offer this companionship support. Applications can be made through Aspire Canterbury ($38 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 $45+GST for 3 years. They also sell a branded lanyard with a strong plastic display wallet for your card for $5 + GST and shipping. You can self-refer for the card and will need to provide evidence of your needs. Our Registered Nurse Service can also complete an application for you. Waka Ora Health Shuttle The Waka Ora Health Shuttle is a koha (donation) based community service, delivered by volunteers, that transports people to health and wellbeing related appointments, and then brings them home again. The service is coordinated by Hato Hone St John. Pick up is generally from your home (or a nearby meeting point), although the service offered varies by area. In our region, the Health Shuttle operates in Aoraki, Ashburton, Christchurch, Kawatiri, Morth Canterbury and West Coast. To find out more, visit Hato Hone St John . 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. MedicAlert bracelet If you have a health condition that may result in emergency care, you may wish to consider purchasing a bracelet from the MedicAlert Foundation . The bracelet is engraved with your personal medical ID and your highest risk information to assist first responders. Responders can then use the ID to access additional information about you through the 24/7 emergency hotline service. Financial Support You may be eligible for financial support from the Ministry of Social Development. Even if you do not meet the criteria for a main benefit, you may be able to access the weekly Disability Allowance for ongoing costs related to a health condition and obtain a Community Services Card. Our Work and Income Assistance page has information on both of these supports as well as criteria for the other potential benefits. Funding for mobility aids or other health supports may also be available through: Lottery Funding for Equipment for People with a Disabilit y — A lottery fund for individuals to access mobility equipment that supports participation in the community such as wheelchairs. Mackenzie Charitable Fund — Aoraki Foundation — A fund to support those living in the Mackenzie district experiencing hardship or health issues. Rehabilitation Welfare Trust — Has limited funding for support of disabled individuals. May contribute to purchase of wheelchairs. An organisation such as MECFS Canterbury must apply on behalf on an individual. Variety New Zealand - Accepts applications for medical fees and equipment for children aged 5 to 18 years.