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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)

Contact Form: First Name Last Name Email Phone Topics Tell us what you need help with SEND Thanks for query. We’ll get back to you shortly. Our Contact Details: For any enquiries, please contact us via the form above, or by email, text, or phone. Email: info@mecfscanterbury.nz Text: 020 4027 0176 Phone: 03 365 5887 Postal address: PO Box 10090, Phillipstown, Christchurch 8145 Our Office: Please ring to make a time to visit. The office is not always open as we are a part-time team, and often have appointments outside the office. Our office is located at: 71 Orbell St, Sydenham, Christchurch 8023 There is onsite carparking. Use park #7 or #8, or one of the visitor carparks. Christchurch Venue: Our monthly Christchurch in-person meetings are held at the lovely Mary Potter Community Centre. Address: 442 Durham St North, St Albans, Christchurch 8014 This venue is just north of Bealey Avenue and has 30 onsite carparks. It also has comfortable lounge chairs and padded seats, and a beautiful garden. To get familiar with the centre before you arrive, you may like to watch the centre’s walkthrough video. Rangiora Venue: Our Rangiora in-person meetings are currently held at The Skurr Centre. Address: 156 Ashley Street, Rangiora Showgrounds, Rangiora This venue has onsite carparks. Our Meeting Venues: Timaru Venue: Our Timaru in-person meetings are held at the Timaru Library, Community Room. Address: 56 Sophia St, Timaru. Other Venues: We use other venues from time to time. Please check the event listing to confirm venue location. Join us: To receive support and /or information about ME/CFS from us on a regular basis, please sign up as a member (it is free). Please complete our membership form, either: Join online or Print PDF and post

Meal preparation can be a difficult task for people with ME/CFS. If possible, try to have some ready-made meals in the freezer or quick meal options for those days when you are very unwell or need to conserve energy for tomorrow's activities. We have curated a list of ready-made meals options below for pickup or delivery to your home. Easy Meals Meal preparation can be a difficult task for people with ME/CFS. If possible, try to have some ready-made meals in the freezer or quick meal options for those days when you are very unwell or need to conserve energy for tomorrow's activities. Consider cooking in bulk and freezing meal-sized portions. We have curated a list of ready-made meals options below for pickup or delivery to your home, or purchase at your supermarket. Not many would be affordable on a tight budget, but perhaps you can share with your whānau, in case they are in a position to purchase some meals for you from time to time. We hope to add supermarket bought easy-prep meal options as well soon. Please note that we made our best efforts to ensure the details were accurate when added, but we may have made some mistakes. Please double check details on the suppliers website before purchasing and do let us know if you discover an error or can suggest an additon. We are grateful to the following ready-made meal suppliers who have offered discounts for our ME/CFS community. See full details and conditions further below. Several suppliers also have discounts for first time purchases or offer specials regularly. Clean Meals - 10% discount EATL8R - 10% discount Kai 2 You - 10% discount Meal Prep - 10% discount My Kitchen Table - 15% discount Also worth highlighting in the list below: Nourish Oraka, a charity based in Shirley, Christchurch, offer meals for $7 each. Meals on Wheels may be an option for you. Ask your GP to refer you. Gluten free and dairy free options are available from Clean Meals, Fit Food, Health Kicks, My Kitchen Table, MYLK Food Store, Primal Kitchen, Richards Real Kitchen. Health Kicks offer low FODMAP options. 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. Meals on Wheels https://www.cab.org.nz/community-directory/KB00033364 Hot, nutritious meals for people who have difficulty preparing their own meals. Freshly made meals with a main and a dessert for 3, 4 or 5 days per week. Meals are subsidised in Canterbury and the West Coast by Health NZ and cost $8.70 each. Clients are invoiced at the end of each month and pay Health NZ Canterbury by monthly direct credit or by automatic payment each week/fortnight. Meals on Wheels (MOW) are available by referral from a General Practice team or other Health Professional for a person that meets the following criteria: unable to prepare a hot meal without assistance due to a medical condition or disability; have no family or whānau assistance readily available; need a delivered meal to maintain good nutrition and independence. Other restrictions may apply. For availability in other regions, visit https://info.health.nz/services-support/support-services/meals-on-wheels or search the CAB website. GLUTEN FREE, LACTOSE FREE, VEGETERIAN, DIABETIC, MINCE, PUREED AND SOFT OPTIONS ARE AVAILABLE. Delivery Details: Free delivery around noon each work day by volunteers, to Christchurch, Lincoln, Kaiapoi, Rangiora, Ashburton, Greymouth, Reefton, Hokitika, and some rural areas. Discount Offered - Nourish Oraka https://nourishoraka.com Affordable healthy meals made by a community group in Shirley, Christchurch. Fresh and frozen meals and soups. Limited range available. Meals from $7 (extra 50c if you don't intend to return the container provided), soup is free or $3. Some items are freshly cooked each Monday and Wednesday and refrigerated for pick up. Unused meals are then frozen and offered for later purchase. GLUTEN FREE, DAIRY FREE AND VEGETARIAN OPTIONS AVAILABLE. see https://nourishoraka.com/products/dietary-options. Delivery Details: Pickup available from in store, 27 Acheson Ave, Shirley at limited times on Monday and Wednesday, or pre-ordered frozen pick-ups are available anytime at Riverlution Pantry, 46A Vogel St, Richmond. They are trialling $5 delivery on Mondays to addresses within 5km. Contact ME Respite https://merespite.org.nz to organise delivery by volunteers within greater Christchurch. Discount Offered - BBQuick https://bbquick.co.nz Real food, made properly — no shortcuts. Freshly made frozen full-sized meals, soups and desserts. Pricing starts at $14.49 per meal. Ready-to-go packs or pick-n-mix to build your own pack. VEGAN AND VEGETARIAN OPTIONS AVAILABLE. Delivery Details: Shipped nationwide from Dunedin with same or next day dispatch. Example shipping fee for 8 meal pack is $14.50 for South Island and $19.50 for North Island delivery. Discount Offered SuperGold Card holders are eligible for $10 off every BBQuick order over $99. Balance by Sim https://balancebysimo.co.nz Ready made meals for a healthy lifestyle by award-winning chef. Freshly made main meals. Subscription or casual pricing starts from $52.00 for minimum of 3 meals per week. GLUTEN FREE, KETO, VEGETARIAN, LOW CARB AND DIABETIC OPTIONS AVAILABLE. Delivery Details: Delivered to your door in the Christchurch city area for $7 per delivery. Order by Sunday for Wednesday delivery. Discount Offered - Clean Meals https://cleanmeals.co.nz Eating clean doesn't need to be bland. Freshly made meals, breakfasts, and snacks. Meals are chilled not frozen. Prices start from $15.50 per meal. Subscriptions and one-off orders available. VEGETARIAN, VEGAN, GLUTEN FREE, DAIRY FREE, NUT FREE, SHELLFISH FREE, SOY FREE, SPICY AND BENSON DETOX OPTIONS ARE AVAILABLE. Delivery Details: Pickup available in Christchurch. Nationwide delivery to your doorstep on Tuesday afternoon. Rural delivery at own risk. The cut-off time to change your meal selections or place an order for the following week is the previous Thursday at 6pm. Discount Offered Use code MECFS25C for 10% off your order. Crisp and Vale https://crispandvale.co.nz Chef-made heat and eat ready meals. Made fresh and stored frozen. Freshly made frozen meals, sides, soup, and dessert. Main meals start from $20.00 serving 2 to 3 people. Casual orders. GLUTEN FREE AND VEGETARIAN OPTIONS AVAILABLE. Delivery Details: Pickup in Sydenham. Same day or next day delivery in Christchurch and surrounding suburbs for $12 within 15km radius, or $25 for up to 25 kms, with minimum spend of $60. Discount Offered - EATL8R https://www.eatl8r.co.nz Nutritious meals delivered to you. The Eatl8r menu changes weekly and with the seasons. Meals, soups, desserts with petite size meals starting at $13 and regular size at $15. Ingredient information provided. Delivery Details: Pickup in Waltham or delivered to Christchurch city suburbs for $6 or Canterbury for $11. Deliveries are made on Thursdays. Discount Offered Use code MECFS10 for 10% off your order. Eat https://www.eat.co.nz Home of fresh, ready to heat and eat meals delivered to your door. Freshly made meals, soups, desserts, and baking with regular sized meals (400g) starting from $13.50 and large (500g) from $15. Frozen potluck boxes and Tiddly meals are frozen. VEGETARIAN OPTIONS ARE AVAILABLE AND TEXTURE MODIFIDED PUREE MEALS ARE AVAILABLE that meet the International Dysphagia Diet Standardisation (IDDSI) Level 4 Puree for people who have difficulty swallowing or have digestive problems. Delivery Details: Delivered nationwide from Wellington with a $35 shipping fee to the South Island. Order by 11am for delivery next day. Discount Offered - Farro https://www.farro.co.nz Dinner made deliciously easy. Build your own meal bundle and care package. Family meals, frozen pizzas, sides, soups, sauces, and desserts. Heat and Eat meals start from $14.99, 2-3 serve meals start from $19.99. Also available to purchase are meal bundles and ready-to-cook options. VEGETARIAN OPTIONS AVAILABLE. Delivery Details: Delivered from Auckland to Christchurch and surrounding areas for $35. Order by Thursday 10am for delivery on Monday. Discount Offered - Fit Food https://www.fitfood.co.nz Healthier. Easier. Better. Fresh and frozen single serve meals, family meals, meal bases, sides, sauces, breakfast meals, and desserts. Fresh meals starting from $12.00. Frozen meals starting from $14.90. Family meals starting from $37.90. Subscription or casual orders. KETO, GLUTEN FREE, DAIRY FREE, VEGAN AND VEGETARIAN OPTIONS ARE AVAILABLE. Delivery Details: Pickup from Rangiora on Monday and Tuesday. Delivery fee within South Island is $12.50. Order by Thursday night for Tuesday delivery. Discount Offered - Freshchef.nz https://freshchef.nz Chef made. Hearty portions are sealed to lock in the freshness & flavour. Freshly made frozen meals and desserts. Meals start from $15.99 with most around $18.49. Order a subscription box or purchase one-off. GLUTEN FREE, VEGAN, VEGETARIAN AND KETO OPTIONS ARE AVAILABLE. Ingredient information provided. Delivery Details: Pickup in Rangiora or delivered nationwide the next day with shipping starting from $9.90. Free shipping on your first order. Discount Offered - Health Kicks https://healthkicks.nz When life happens. We have you covered. Fresh lunch and dinner meals changing each week. Plans start from $70.00 per week for 5 meals. Order meal packs by subscription or one-time purchase. MOST MEALS ARE GLUTEN AND DAIRY FREE. VEGETARIAN AND VEGAN OPTIONS ARE AVAILABLE. Delivery Details: Order by Monday evening for delivery in Christchurch, Timaru and Ashburton on the following Monday. Shipping within Christchurch around $7. Do not deliver to rural addresses. Discount Offered - Healthy Kiwi Dinners https://www.healthykiwidinners.co.nz/ Roast dinners and more that bring comfort, warmth and satisfaction. Frozen and fresh meals, salads, sandwiches, soup and desserts. Fresh meals from $14 and available in three different sizes. Frozen meals are $14 each. Bulk pricing specials. Order by phone. GLUTEN FREE AND VEGETARIAN OPTIONS AVAILABLE. Delivery Details: Pickup in Woolston or delivered to Christchurch area only for around $8 on minimum order of $30. Discount Offered - Just Good Food https://justgoodfood.co.nz Want natural, home-made meals without the fuss of making it? Frozen meals and desserts. Regular meals $12.00, large mains $14.00, Desserts are $10.00. Ingredient information provided. Delivery Details: Christchurch delivery only with $5 fee for minimum order of $40. Free delivery for orders over $100. Order by 2pm Tuesday for delivery Thursday. Discount Offered - Kai 2 You https://www.kai2you.co.nz Ready to heat and eat meals. Made with love. Fresh meals, frozen pies and sausage rolls, soups, scones and desserts. Regular meals from $15, petite meals $11, soup $5. No subscriptions. New menu every week. Gift vouchers are available. Ingredient information available. Delivery Details: Pickup in Papanui or delivered to greater Christchurch with $6-$8 per delivery, based on a minimum order value of $30. Discount Offered Use code MECF10 for 10% off. Supergold card holders get 14% off with code super14. MYLK Food Store https://mylkfoodstore.com From my little kitchen to yours. Handcrafted nutritious meals ready in minutes. Freshly made meals, soups, sides and desserts. Soups start from $9, main dishes from $9.90 (single 200g size). Menu changes each week. One-off orders. Gift vouchers available. GLUTEN FREE, DAIRY FREE AND VEGATERIAN OPTIONS AVAILABLE. Delivery Details: Delivered from Napier to the South Island for $25. Cannot deliver to rural addresses. Order before 4pm on Tuesday for delivery following Tuesday. Discount Offered - Meal Box https://www.mealbox.nz Chef crafted meals. Save time and energy. Freshly made main meals that are flash frozen, and breakfasts. Main Meals from $15.99 each. Breakfast add ons are $9.00. Purchase one-time or on subscription. KETO, LOW CALORIE AND PROTEIN+ OPTIONS AVAILABLE. Ingredients information provided. Delivery Details: South Island shipping cost is $29.99, and North Island is $14.99. Minimum of 5 meals need to be ordered. Next day delivery. Discount Offered - Meal Prep https://mealprep.nz High-protein meals—no prep, no stress. Just heat, eat, and enjoy! Freshly made breakfast meals, lunch and dinners. Lunch and dinner from $14.90. Care packages and gift vouchers available. DAIRY FREE, VEGAN, PLANT BASED AND VEGETARIAN OPTIONS AVAILABLE. Delivery Details: Delivered to the South Island within two days for $28. Discount Offered Use code MECFS10 for 10% off first order of 3 different meals above $50. Not available on subscriptions or meal plans. My Food Bag – Ready Made Meals https://www.myfoodbag.co.nz/ready-made-meals Award winning. Fresh, Ready-Made Meals. Freshly made meals, soups and dessert. 18 meals to choose from every week including homestyle favourites and healthy options. Order in bulk from 4, 6, 9 or 12 meals per week. Pricing starts from $72 for 4 meals ($18 per plate). Purchase on subscription or one-off order. Ingredient information provided. Delivery Details: New Zealand wide delivery $15. Delivered to your door on Saturday, Sunday or Monday depending on your area. Discount Offered - My Kitchen Table https://mykitchentable.nz Chef quality meals proudly made fresh and frozen in Nelson. Freshly made frozen meals, soups and meal boxes. Soups from $9.99 each, single mains from $12.99 and double from $19.99. Meal Boxes start from $89.00. Also available in selected Fresh Choice and New World supermarkets. GLUTEN FREE, DAIRY FREE, VEGAN AND VEGETARIAN OPTIONS AVAILABLE. Delivery Details: Delivered from Nelson to Canterbury and West Coast $14.90 per order. Orders made by noon are normally delivered the next day. Discount Offered Use code MECFS15 for 15% off. Not available on specials. Pasta Vera https://pasta.co.nz/product-category/retail-range/ready-meals/ Locally made lasagne, filled pasta, and ready meals. Lasagne, pasta and other meals. Meals from $9.49. VEGETARIAN, VEGAN, GLUTEN FREE AND DAIRY FREE OPTIONS AVAILABLE. Delivery Details: Available from selected supermarkets and the factory store in Wigram. Discount Offered - Primal Kitchen https://primalkitchen.co.nz All natural. Grain free. No refined sugar. Soy free. Freshly made meals, frozen meals, meal packs, subscriptions, family packs, snacks and treats. Frozen Meals start from $14.95, frozen subscriptions start from $69.95 per week, Random selection of frozen meals are $15.25. Gift Vouchers available. GLUTEN FREE, DAIRY FREE AND KETO OPTIONS ARE AVAILABLE. Delivery Details: Delivered from Porirua, Wellington, to South Island for $35. Order on Friday for delivery on following Tuesday or Thursday. Discount Offered - Richards Real Kitchen https://www.richardsrealkitchen.co.nz Delicious fresh and frozen heat and eat meals in single and family size. Fresh and frozen meals, soups and desserts. Meals from $14 each for a single serve (large by weight, volume and protein), family-sized from $39. One-off orders. Gift vouchers available. GLUTEN FREE, VEGAN, DAIRY FREE AND VEGETARIAN OPTIONS AVAILABLE. Fewer processed additives. Delivery Details: Pickup from Wigram or delivery fee from $5 for Christchurch and surrounding areas. Order by 11am for same day delivery. Leave a chilly bin on the doorstep for delivery. Discount Offered - Strength Meals https://strengthmealsco.co.nz/ High protein, macro balanced meals formulated by nutritionist Frozen meals and chilled or canned soups. Soups $5.50 and meals $13.50. VEGETARIAN, VEGAN, GLUTEN FREE, DAIRY FREE, LOW SUGAR OPTIONS ARE AVAILABLE. Delivery Details: Only available from Woolworths supermarkets. Discount Offered - Timata https://www.timata.nz Tīmata provides easy access to affordable, nutritious ready-made meals. Fresh meals and desserts purchased in bulk. Six meals for $79.98 ($13.33 each) or 8 Meals for $99.98 ($12.50 each). Subscription, with variable weekly options. Timata provides additional supports designed for the Enabled Good Lives disabled community including delivery of medications and groceries, and a platform to connect providers with members. Delivery Details: Free delivery nationwide from Invercargill, excluding rural delivery addresses. Delivered overnight or on the day selected. Discount Offered - Traiteur https://www.traiteur.co.nz/order/heat-eat Homemade happiness, delivered to you. Heat and eat meals, soups, salads, sweet treats, and butchery meat. Heat and eat meals start from $14.50, soups $10.50, salads from $7.50, weekly menu starts from $21.95. treats from $4.95. One-off orders. VEGETARIAN OPTIONS ARE AVAILABLE. Delivery Details: Pickup from Papanui or delivery in surrounding neighbourhood on Tuesday, Thursday, and Friday. Discount Offered -

Some people who have been infected with COVID-19 find that they have ongoing symptoms months afterwards. This chronic illness is sometimes referred to as Long COVID, Post-Acute COVID Syndrome (PACS), or Post-COVID-19 Syndrome. The symptoms of Long COVID may include: organ damage, the core symptoms of ME/CFS, (including fatigue, post-exertional malaise, brain fog) and other concerns. Long Covid and ME/CFS are both examples of a serious and debilitating condition that can follow any type of viral infections. There are some important differences that distinguish some people with Long COVID from those with ME/CFS. However, some people who have Long COVID can also be diagnosed with post-COVID ME/CFS. To explore this topic further in-depth we suggest the article published in Frontiers in Medicine in 2023, titled 'ME/CFS and Long COVID share similar symptoms and biological abnormalities: road map to the literature'. https://www.frontiersin.org/articles/10.3389/fmed.2023.1187163/full ME/CFS and Long COVID All services provided by MECFS Canterbury are available to people with Long Covid who are experiencing ME/CFS-like symptoms. Our Registered Nurse Service can partner with other health providers who are supporting people living with Long Covid. How we help PREVIOUS PAGE

Testimonials Feedback received from a member in our 2023 Annual Survey “I just feel amazed that the organisation exists. I know that if I have an issue related to CFS that I cannot resolve myself, there is someone I can ask who will understand, and who may know how to get me the help. I also appreciate the kind and social nature of much of the communication; this is a health condition but it affects every domain of our lives, and so the efforts to connect and facilitate care and fun and connection even beyond the healthcare domain feel especially profound. You’d only set up your organisation that way if you understood what weird and indirect impacts this illness can have on your life, so to me the whole thing communicates understanding and an approach of 'you are welcome here'. What a beautiful thing to have when you are dealing with such a complex and overwhelming illness."

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

Privacy notice for MECFS Canterbury MECFS Canterbury complies with the Privacy Act and the Health Information Privacy Code . If you are not satisfied with our response to any privacy-related concern you raise with us, you can contact the Privacy Commissioner . Collection and Use of Personal Information We may ask you to provide and collect personal information from you, including the following information: Name, Age, Ethnicity Contact information Interactions with us Membership status Survey responses (not linked to personal information) Consent agreements for services Health details Clinical notes and support activity We collect your personal information in order to: Stay in touch and inform you about our activities. Provide statistical summarised information to our funding providers. Provide support and services to you, and to respond to feedback and queries. With your permission, we may share relevant health information with other healthcare professionals in a confidential manner, with the aim of improving the support you receive from your healthcare team. Providing some information is optional. If you choose not to provide contact details and information about your health, we may not be able to provide you with expected services. We keep your information safe by storing it securely (password-protected electronic storage and databases) and allowing only those authorised to see it. Paper based records are shredded when no longer needed. You have the right to ask for a copy of any personal information we hold about you, and to ask for it to be corrected if you think it is wrong. If you would like to ask for a copy of your information, or to have it corrected, please contact us at info@mecfscanterbury.nz , or 03-365-5887. Collection and Use of Website Visit Information Statistical Information We may collect statistical information about your visit to this website to help us improve it. This information is aggregated and doesn’t identify you personally. It includes: Your IP address The search terms you used The pages you visited on our site and the links you clicked on The date and time you visited the site The referring site (if any) from which you clicked through to this site Your operating system, for example Windows XP, Mac OS X The type of web browser you use, such as Edge, Chrome or Mozilla Firefox Other things like your screen resolution and the language setting of your browser. The statistical information referred to above can be viewed by site administrators and certain other staff. It may also be shared with government agencies. Google Analytics We use Google Analytics on our website to track your actions and help us optimise our site for conversions and usability. While we can see data gathered over a timeframe, we do not collect personally identifying information from any source as part of the terms of service of Google Analytics. A condition of our use of Google Analytics is that we make reasonable endeavours to bring to your attention the following statement: This website uses Google Analytics, a web analytics service provided by Google, Inc. (“Google”). Google Analytics uses “cookies”, which are text files placed on your computer, to help the website analyse how users use the site. The information generated by the cookie about your use of the website (including your IP address) will be transmitted to and stored by Google on servers in the United States. Google will use this information for the purpose of evaluating your use of the website, compiling reports on website activity for website operators and providing other services relating to website activity and internet usage. Google may also transfer this information to third parties where required to do so by law, or where such third parties process the information on Google’s behalf. Google will not associate your IP address with any other data held by Google. You may refuse the use of cookies by selecting the appropriate settings on your browser, however, please note that if you do this you may not be able to use the full functionality of this website. By using this website, you consent to the processing of data about you by Google in the manner and for the purposes set out above. We have implemented Google Analytics demographic and interest reporting based on the Google Display Network in order to provide information about users that is used to optimise our website. Any data collected by Google for the purposes of Google Analytics will be treated according to Google’s Privacy Policy. If you would like to opt-out of being tracked by Google Analytics, then you can do so using the Google Analytics Opt-out Browser Add-on. Cookies This site generates persistent session cookies (that is, they have an expiry date and are removed on that date) for the purpose of monitoring site usage. The cookies don’t collect personal information. You can disable them or clear them out of your web browser without affecting your ability to use the site.

Getting Diagnosed At this stage, there are no specific diagnostic tests available that can be done in a clinical setting to confirm ME/CFS. However, healthcare professionals can make a diagnosis by using the diagnostic criteria, excluding other possible conditions, and ensuring that post-exertional malaise (PEM) is present. VIEW THE DIAGNOSTIC CRITERIA Your doctor is likely to refer to the clinical advice for ME/CFS on the Health Pathways website provided by Te Whatu Ora | Health New Zealand and may: Ask about you and your family’s health history. Ask about anything you have tried that makes the symptoms better or worse. Suggest that you keep a diary of symptoms and activity. Do a physical exam or take blood tests to rule out any illnesses that may cause similar symptoms. We have a lett e r that you can take to your GP to let them know about the new clinical guidelines for ME/CFS on the Health Pathways website. DOWNLOAD A LETTER FOR CANTERBURY GPS DOWNLOAD A LETTER FOR WEST COAST GPS Our Registered Nurse Service is available to support you when you are wondering if you have ME/CFS and are seeking a diagnosis. Our nurses work through the assessment process against the diagnostic criteria with you, and then, with your permission, can share the result with your GP. How we help For a comprehensive list of clinical primers and other resources for health professionals refer to: Link https://m.e.awareness.nz/resources-health-professionals/ PREVIOUS PAGE NEXT PAGE

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

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 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.healthinfo.org.nz/Chronic-fatigue-syndrome-CFS.htm . 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. 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 Awawhenua Whanau 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.

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