Search Results

The main management approach for ME/CFS is reducing your activity to a level that can be sustained and that avoids triggering Post-Exertional Malaise (PEM). We provide some guidance on activity management and pacing here. Activity Management The main management approach for ME/CFS is reducing your activity to a level that can be sustained and that avoids triggering Post-Exertional Malaise (PEM). Post-exertional Malaise (PEM) is a core symptom of ME/CFS and it is an abnormal response to normal activity. It is a disproportionate and prolonged increase in symptoms. PEM makes us sicker and makes it harder to function and participate in our daily life. PEM can be triggered by various kinds of activity - physical, mental, emotional, orthostatic (moving to an upright position), sensory overload, multi-tasking, and physiological processes (temperature regulation, digestion). PEM often occurs hours or days after the triggering activity. Activity management is key to minimising PEM and to stabilising symptom severity. Adopt the ‘Stop, Rest, Pace.’ approach and practice pacing as your commitments allow. We provide more detailed information below. Pacing Pacing helps us avoid triggering PEM. Pacing means adjusting your life to stay within your 'Energy Envelope' as much as possible. Pacing involves: Prioritising what to spend energy on - and choosing which activities to reduce or drop altogether (this may include making life-changing decisions such as reducing employment, retiring, or dropping out of education). Changing the way chosen activities are done so they require less energy (this may include use of mobility aids). Breaking activities down into short bursts. Interspersing activity with rest (physical, cognitive & sensory rest - including rest from screens). Aiming for a balance of necessary activities and pleasurable activities. Creating (usually) safe and energy-efficient routines for regular necessary tasks (this helps reduce cognitive load). Stopping before symptoms increase and taking pre-emptive rest (some patients experience subtle cues when getting close to exceeding their Energy Envelope but many don't so they need to be proactive). Pacing sounds simple but it is not easy to put into practice, and it is individual to you. Be kind to yourself as you cope with daily demands and as you learn about your energy envelope. When exploring what you can manage, it can be useful to keep an 'activity and symptom diary' for a few weeks to see if you can identify any patterns, early warning signs and triggers which could help to reduce PEM episodes. You might find our diary template useful to do this. Wearable Biometric Devices: Some people find using a wearable activity tracker helpful for completing their activity diary, and for keeping steps or heart rate under a certain level. Although a tracker does not measure cognitive or emotional activity, it can help you recognise activities and tasks where your heart is elevated (meaning you are using more energy or under more stress). A good basic activity tracker is the Xiaomi Smart Band and we have some of these available for loan. The Polar H10 HR strap is recommended if you wish to monitor Heart Rate Variability. Further reading: To find out more about pacing, we recommend these resources from Emerge Australia : Introduction to the 'Stop.Rest.Pace ' approach. Two-page Pacing handout which provides a 4-step approach. Five-page handout on Pacing with a Heart Rate Monitor to help determine your anaerobic threshold and energy envelope. ME Support - NZ also has an eight-page Basics of Pacing handout in their Long Covid Support Tool . We also recommend these resources from M.E. Awareness NZ: An Explanation of PEM for people with ME article The Art and Science of Pacing for ME article Articles about Heart Rate Variability: One-page HRV handout from Bateman Horne Centre What is Heart Rate Variability? , Elite HRV Lifehacks for ME/CFS Visit our Lifehacks section for some tips and tricks for managing your daily activities. Practical Supports Visit our Practical Supports section for some other ideas for finding easier ways to do things, so that you can more often live within your energy envelope. Suggestions include using mobility aids and energy saving approaches. Safely exploring exercise When you live with a broken energy system, you need to a pproach exercise as ‘movement’ for your health and wellbeing, rather than ‘exercise’ to improve fitness. We have a few presentations on this topic that you may wish to watch: Safely exploring 'exercise' or movement when you have ME/CFS Rachel Sullivan, Clinical Exercise Physiologist, covers the dangers and recommendations. Analeptic restorative activity in ME/CFS Catherine George, Physiotherapist, explains how to improve functional strength and flexibility. The following organisations provide guidance for safe exercise: Physios for ME (UK-based) Workwell Foundation ( USA)

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...

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

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.

How We Help We are focused on providing services, resources and connections to improve the lives of people affected by ME/CFS and Long Covid throughout the Canterbury and West Coast regions. Our core team of six part time employees and several volunteers bring passion to this work, but unfortunately our capacity does not fully match the needs of our community, and there are waitlists and other limitations for some of our services. We apologise for this and assure you that we are exploring opportunities to increase the funding for our services. We invite you to explore the services that are available from us below. Registered Nurse Service Our Registered Nurse Service is delivered through home visits, zoom consultations, and other interactions to people of all ages. Our nurses help members with assessment for diagnosis, management of symptoms, advocacy, and more. READ MORE Group Meetings and 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. Non-m embers and whanau are also welcome to attend. READ MORE Online Community We invite people affected by ME/CFS or Long COVID throughout the South Island to join our peer support group on Facebook to share information and experiences and to support each other. You don't need to be a registered member with us to join this group. READ MORE Volunteer Outreach Services We have a growing team of wonderful volunteers who help our members with tasks such as housework, dog-walking, gardening, friendly company, and technical support. READ MORE Work and Income Advocacy Our advocates support our members to explore what financial support may be available from Work and Income. READ MORE Newsletters We release bimonthly newsletters containing updates on the activities of the organisation, information about managing and living with ME/CFS, latest research, plus more. READ MORE Library Our library of books and equipment is available to members free of charge. The catalogue can be browsed online and we can post books out to you and arrange for their return to us. READ MORE Intervention Fund We operate a small Intervention Support Fund to cover semi-urgent costs that members are unable to manage. READ MORE Advocacy We are involved with advocacy at an organisational level, both regionally and nationally. READ MORE

Support the business activities of our chronically ill community We are delighted to showcase some of the businesses and other activities of our chronically ill community. When someone lives with a chronic illness like ME/CFS, a home-based business might be the best option, as it is likely to enable the flexibility to rest when it is needed and to schedule activity carefully. Our community would welcome your support! Click on the images below to view their website or other social media. If you are a member of MECFS Canterbury and have something you would like to promote (e.g. an exhibition, a book, home based business or hobby) please email us. We would love to hear about it and consider it for promoting here. DISCLAIMER: We have no formal relationship with the business activities listed on this website page. Links to these activities are included for convenience. ME/CFS Canterbury / West Coast is not responsible for the currency or accuracy of content on such websites and the inclusion of such links does not imply endorsement by MECFS Canterbury 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 businesses and individuals listed. @fmm.stones Hand painted stones Fiona paints stones with beautiful designs and colours, and then seals them. There is also a range of gorgeous ladybugs. Great for small gifts, to put in fairy gardens, Christmas stockings, pot plants, etc. Or to leave in a public park for others to find. Katie Cowan Personal development coaching Katie works with people on the things they are struggling with or hoping for, with a particular focus on those seeking post-traumatic flourishing (including after/amidst chronic illness), people at a crossroads or new chapter, and people wanting to play bigger in their lives. Allyssia's Designs Hospital and travel kits & supplies Allyssia creates hospital, emergency and travel kits just for you or whānau. She has a range of premade kits but you can also select exactly what items you need and select the pouch or toiletry bag you want. Saskia Grace Life coaching Saskia offers a safe space, guidance and practical strategies to help you gain clarity and achieve your goals. For people with ME/CFS, she understands the challenges that brings. She also offers you a discounted rate and payment plans. Resolve Consultancy Chronic illness and work Liz is passionate about helping people with chronic fatigue-related health conditions to find accommodations and approaches that enable them to continue working. She also writes for clients on various health-related topics, and is an informed speaker.

Donate We rely on grants and donations to fund our services because we do not currently receive any funding from the government's Health budget. Every dollar donated helps us to employ a skeleton part-time team and cover our operational costs. A one-off or regular donation helps us cover these example costs: $5 Posting our newsletter to a client who finds it easier to read a paper copy. $17 Monthly phone plan for one of our staff to call their clients. $20 Reimbursing staff for travel costs to visit one of their clients. $40 Purchasing a new book for our library. $60 Supporting a client to access benefits and other payments from Work and Income. $100 Venue hire and refreshments for one of our group meetings around the region. $250 Initial visit to a client by one of our Nurses, to explore diagnosis and symptom management, and to complete follow up referrals and a management plan. $400 Delivering an education session for health professionals or another organisation. $500 Supporting a student to remain at the Southern Health School for a year. $1800 Rent and utilities for our office for a month. Ways to Donate Internet Banking Donate directly to our bank account Westpac 03-0802-0060232-000 Our legal name is 'ME/CFS Canterbury / West Coast Charitable Trust' Please use our Donation form to let us know you have done so. This enables us to send you a donation tax receipt and to say thanks! DONATION FORM Debit or Credit Card We can also accept payment by Debit or Credit Card, and Google Pay. Use our Donation Form to access these payment options using our Stripe online payment facility. DONATION FORM Givealittle The Givealittle website enables donations to be made by credit card, internet banking, or Givealittle wallet. You choose the amount and the frequency (one-off, monthly, fortnightly, or weekly). You can also select whether your name or ‘guest donor’ appears against the donation. GIVEALITTLE WEBSITE Payroll Giving If you are wanting to make a regular donation, however small, the Payroll Giving facility is available to employees to make a donation through your employer’s payroll system. Donations made via Payroll Giving receive an immediate PAYE credit of 33% of the donation amount. This avoids the need for charities to generate Donation Tax Receipts and for the donor to collect and submit Donation Tax Receipts to the Inland Revenue Department. Talk to your employer to enter this scheme, or visit to https://www.ird.govt.nz/roles/employees/payroll-giving-as-an-employee find out more. You will need these details: Organisation Name with IRD is ‘ME/CFS Canterbury / West Coast Charitable Trust’ Charity registration number is CC32072. We have a bank account with Westpac 03-0802-0060232-000 Your employer will pass the donation to us, and let us know it is from Payroll Giving. Please let us know if you set Payroll Giving up, as we would appreciate the opportunity to say thanks. CONTACT US Donate Items We welcome donations of items for our use or for our book and equipment library, and also welcome items for resale on our Trade Me account. ENQUIRE ABOUT DONATING ITEMS

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

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

A list of discounts on products and services offered by businesses to our ME/CFS community Discounts offered on Products and Services We are grateful to the businesses below who have kindly offered discounts on their products and services for our ME/CFS community. When we live with a debilitating chronic illness, we often have very limited income, and it is really helpful to have access to discounted products and services. Discounts on this list were correct when added. Please do let us know if you discover the discount or service is no longer valid or details have changed, so that we can update this list. DISCLAIMER: We have no formal relationship with the business activities listed on this website page. Links to these activities are included for convenience. ME/CFS Canterbury / West Coast is not responsible for the currency or accuracy of content on such websites and the inclusion of such links does not imply endorsement by MECFS Canterbury 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 businesses and individuals listed. Clean Meals Ready-Made Meals https://cleanmeals.co.nz/ Eating clean doesn't need to be bland. Freshly made meals, breakfasts, and snacks. Meals are chilled not frozen. See our Easy Meals list for more details about this supplier. Discount Details Use code MECFS25C for 10% off your order. EATL8R Ready-Made Meals http://www.eatl8r.co.nz Nutritious meals delivered to you. The Eatl8r menu changes weekly and with the seasons. Meals (regular or petite sized), soups, desserts. Ingredient lists available. Pickup in Waltham or delivered to greater Christchurch See our Easy Meals list for more details about this supplier. Discount Details Use code MECFS10 for 10% off your order. Kai 2 You Ready-Made Meals https://www.kai2you.co.nz Freshly made & delivered. No subscriptions. Value for money. New menu every week. Meals (regular or petite sized), soups, scones, desserts. Ingredient lists available. Pickup in Papanui or delivered to greater Christchurch See our Easy Meals list for more details about this supplier. Discount Details Use code MECF10 for 10% off. Supergold card holders get 14% off with code super14. Meal Prep Ready-Made Meals https://mealprep.nz High-protein meals - no prep, no stress, Care packages and gift vouchers. Freshly made breakfast, lunch and dinners, Dairy free, vegan, and vegetarian options are available. No preservatives. Delivered two days after order from Papamoa. See our Easy Meals list for more details about this supplier. Discount Details Use code MECFS10 for 10% off first order of 3 different meals above $50. Not available on subscriptions or meal plans. My Kitchen Table Ready-Made Meals https://mykitchentable.nz Chef quality meals proudly made fresh and frozen in Nelson. Freshly made frozen meals (single or double serve), soups and Meal boxes. Gluten free, dairy free, vegan and vegetarian options. Delivered from Nelson. See our Easy Meals list for more details about this supplier. Discount Details Use code MECFS15 for 15% off. Not available on specials.

Over time, you will discover ways that work for you to save your energy and help to make your everyday activities more manageable. It can be really useful to hear from others what they to do make things simpler and to reduce symptom flares. Lifehacks and Tips Over time, you will discover ways that work for you to save your energy and help to make your everyday activities more manageable. It can be really useful to hear from others what they to do make things simpler and to reduce symptom flares. Anna-Maria's Lifehacks Anna-Maria Covich has collated a range of life hacks learnt from managing (and often failing to manage) her ME/CFS over many years. We invite you to watch the recording of her presentation on her tips and tricks and why she finds them helpful. Whether you are newly diagnosed with ME/CFS or have some experience living with ME/CFS, you are likely to find some new ideas for saving energy and managing symptoms from this session. View the presentation on YouTube or review the pdf of the slide deck . We also have printed booklets of the slide deck - feel free to order a copy from our library. To discuss this topic further, come along to one of our meetings or connect with others online. Other Resources Library of articles on www.cfsselfhelp.org/library from the ME/CFS and Fibromyalgia Self-Help Program, a non-profit organisation founded by Bruce Campbell, PhD, a recovered CFS patient. The ME/CFS Crash Survival Guide from Bateman Horne Centre, USA. Advice from ME Association UK, who are strongly evidence-based. They provide general guidance and leaflets covering a wide range of topics meassociation.org.uk/free-literature-downloads/ Visit our Links page for more information.