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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.

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

Fundraise Do you have a birthday, anniversary, or other special occasion coming up? Or want to set yourself a physical challenge and participate in a running, cycling, swimming or triathlon event? Why not ask your whānau and networks to donate to MECFS Canterbury or sponsor your participation and raise some awareness at the same time? Want to host a fundraiser? Talk to us about setting up a fundraising page that links to MECFS Canterbury on sites such as Givealittle. First Name Last Name Email Message Thanks for your interest! Send Tshirts for fundraising events: If you are looking for tshirts that raise awareness of ME/CFS while you are doing your fundraising, we suggest you take a look at the range from M.E. Awareness NZ. SEE ALL M.E. AWARENESS NZ T SHIRTS

Spectrum of Severity The severity of ME/CFS is on a spectrum. The level of symptoms and severity experienced by each person with ME/CFS is unique and is likely to fluctuate over time. Some people do improve or go into remission for periods of time. Often those who are most severely unwell are those who were not given the advice to rest and pace activites when first unwell. Historically, four general terms are used to categorise the wide spectrum of disease severity and functional impairment seen in ME/CFS: Mild, Moderate, Severe, Very Severe. It’s worth noting that a ‘Mild’ level of severity may be close to a 50% reduction in functionality – certainly not a ‘mild’ impact for the person living with it. For others who are in the Mild catgory, they may be able to live a fairly normal life if they avoid exceeding their activity limits. Mild Mobile and able to self-care. May be working or attending school, but often with accommodations and by reducing other domestic and social activities. Severe Mostly homebound. Limited activities of daily living (e.g., self-care, showering, dressing). Severe cognitive difficulties. May be wheelchair dependent. Moderate Reduced mobility and restricted activities of daily living. Requires frequent rest periods and typically not working or attending school. Very Severe Bedbound. Unable to carry out most activities of daily living for themselves. Often extreme sensory sensitivity to light, sound, touch, etc. May need total care Quality of Life ME/CFS is a disabling illness that affects daily life. Studies that look at the Health-Related Quality of Life index (HRQoL) consider five dimensions: Mobility Self-care Usual activities Pain/discomfort Anxiety/depression Results of studies for people with ME/CFS confirm a significantly lower quality of life than the population mean and the lowest of all the compared conditions. ME/CFS – 0.47 Depression - 0.62 Multiple Sclerosis – 0.67 Breast Cancer – 0.75 General Population – 0.85 Link https://doi.org/10.1371/journal.pone.0132421 PREVIOUS PAGE NEXT PAGE

Registered Nurse Service Our Registered Nurses provide a range of clinical supports for our members and their whanau. A Nurse can also talk to your health team, education provider and workplace, to improve understanding and to discuss care and accommodations. The Registered Nurse Service is free and is delivered through home visits, zoom consultations, and other interactions to people of all ages. An initial assessment involves discussing your previous medical history, your current situation and what ongoing supports you may need. Areas of support may include: Clinical support for symptom management and obtaining a diagnosis. Short term loan of a wearable activity tracker, to help monitor the impact of your activity on your symptoms, and to assist you to pace within your energy envelope. Advocacy with GP’s, Physicians, allied health, employers, education providers, whānau and others. Management plans for students attending the Southern Regional Health School. (SRHS is a state school for children in Years 1 to 13 who are unwell.) Referrals to allied health and other external supportive services (including CDHB Occupational Therapy, CDHB LTS-CHC (Long Term Support – Chronic Health Conditions), Pegasus Health PCW (Partnership Community Workers), Comcare – Peer Support, Total Mobility Card) Applications for the Hāpai Access Card which give people with disabilities better access and support from retailers and public areas. Due to funding constraints, our Registered Nurse Service is only available to people who have or suspect they have ME/CFS or Long Covid in the Canterbury and West Coast regions. The exception to this is for young people from throughout the South Island who attend the Southern Regional Health School. Please note that there is currently a waiting list for our Registered Nurse Service and you may need to wait for several months before receiving first contact from a nurse. We apologise for this and assure you that we are working hard to increase the funding for our services. To access this service: To refer yourself to the Registered Nurse Service, sign up as a member and note on the form what help would be beneficial, and one of our team will be in touch. Existing members can email us to request a referral to the Registered Nurse Service. FILL OUT OUR MEMBERSHIP FORM OR ASK YOUR GP TO FILL OUT THE REFERRAL FORM Our Registered Nurse team is also available to provide general information about ME/CFS to medical professionals and community-based service providers.

We have gathered some information that may help you to stabilise your symptoms and improve your quality of life in other ways. Topics include activity management, working with your doctor, financial assistance, and more. We will add to this over time, so please check back. Living with ME/CFS The best approach when learning to live with Myalgic Encephalomyelitis /Chronic Fatigue Syndrome is to implement regular rest and to prioritise what you spend your limited, faulty energy on – we call this ‘pacing’. This is understood to give you the best chance for improving. The aim of pacing is to minimise Post-Exertional Malaise (PEM) from occurring, to stabilise symptoms, and to avoid getting worse. It will take some time to explore: • what your activity limits are, • what activities you can manage and what you can’t, and • what approaches help and what don’t. Your energy and wellness levels may change over time, so what is manageable will change too. Unfortunately, there are no treatments that are proven to be completely effective for ME/CFS yet, and not everyone finds benefit from the same approaches. A silver lining of the COVID-19 pandemic is that there is more research underway into post-viral illness and this should bring insight and treatments for ME/CFS also. Despite the lack of evidence-based treatments, there are some supplements, medications, aids, and lifestyle changes available that may provide some relief from symptoms or improve your quality of life in other ways. We have provided information about what expert clinicians suggest and what the ME/CFS community have found helpful in the sections below and will add to this over time. Talk to one of our Registered Nurses and/or find a doctor you trust to work with you. They may be able to help with pain, sleep problems and orthostatic intolerance (problems with being upright) and managing food sensitivities, as well as arrangements for home care, financial support, and counselling. Please be aware that a lot of content online or in books is not evidence-based. More research is needed to fully understand the causes and best treatments for ME/CFS. DISCLAIMER: MECFS Canterbury does not provide recommendations for any treatments for your particular situation on this website. Any advice, either explicit or implied, is not intended to replace the qualified medical advice that is necessary for each individual. Please discuss any lifestyle and treatment changes with your doctor first. MECFS Canterbury does not accept any responsibility for any treatment undertaken by readers of any content or for any error or omission in connection with an article or content published on this website. Remember to give yourself permission to rest, practice pacing, accept offers of help, and to be kind to yourself. Activity Management READ MORE Working with your Doctor READ MORE Work and Income Assistance READ MORE Practical Supports READ MORE Lifehacks and Tips READ MORE Supplements and Treatments READ MORE Managing Specific Symptoms READ MORE Mental Wellbeing READ MORE How We Help READ MORE Easy and Ready-Made Meals READ MORE Crash Wear Merchandise READ MORE Discounts for our Community READ MORE

Work and Income Advocacy When we live 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. We have summarised the income support available 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 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 in Christchurch (800 000 043 or office@bas.org.nz ) 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.

We invite you to watch Nurse Wendy Dragt’s talk about Orthostatic Intolerance (OI) and its Management – now available on our youtube channel < Back Orthostatic Intolerance and its management Presentation 1 Sept 2025 We invite you to watch Nurse Wendy Dragt’s talk about Orthostatic Intolerance (OI) and its Management – now available on our youtube channel We invite you to watch Nurse Wendy Dragt’s talk about Orthostatic Intolerance (OI) and its Management – now available on our youtube channel https://youtu.be/HSj8zcK7XK0 OI is a common symptom in # MECFS, Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. There are various types including #POTS (Postural Orthostatic Tachycardia Syndrome), #NMH (Neurally Mediated Hypotension) and low Orthostatic Intolerance. This presentation covers: ✦ Definition and background ✦ Patho physiology – what’s going on? ✦ Diagnosis ✦ Management ✦ Resources This recording provides useful information for people with ME/CFS, POTS, or NMH, their health team, and whānau. At 62 minutes long, you may need to take some breaks and watch it over a couple of sessions. Expand the description for the video on YouTube to access the pdf of the slide deck and a timestamped list of the slides, plus more. ___________________________ DISCLAIMER: Please note that ME/CFS Canterbury / West Coast does not recommend any treatments for any individual. Any advice, either explicit or implied, is not intended to replace qualified medical advice. We do not accept any responsibility for any treatment undertaken by readers of any articles or other content, or for any error or omission in connection with any content published on our social media. ME/CFS Canterbury / West Coast is not responsible for the accuracy of content that we link to. The inclusion of such links does not imply endorsement by ME/CFS Canterbury / West Coast. Previous Next

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.

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

Health NZ has acknowledged that ME/CFS is a debilitating, long-term illness in the new Health Conditions section on their website. < Back New Health Information page for ME/CFS from Health NZ 22 Sept 2025 Health NZ has acknowledged that ME/CFS is a debilitating, long-term illness in the new Health Conditions section on their website. The Health Conditions pages are intended for the public to provide introductory information about health conditions and their causes, symptoms, diagnosis, and treatments. For Chronic Fatigue Syndrome, Health NZ highlights the key symptoms, the diagnostic criteria in use in New Health NZ has acknowledged that ME/CFS is a debilitating, long-term illness in the new Health Conditions section on their website. For Chronic Fatigue Syndrome, Health NZ highlights the key symptoms, the diagnostic criteria in use in New Zealand, the need to pace your activity to avoid triggering Post Exertional Malaise, and more. You can read the information and share it with whānau from here: https://info.health.nz/conditions-treatments/brain-and-nerves/chronic-fatigue-syndrome It’s worth mentioning that GPs have access to more extensive clinical guidance for ME/CFS on Health NZ’s Health Pathways website for doctors. The Health Pathways for ME/CFS was updated and extended in February 2025, so do ask your GP if they have read the guidance for ME/CFS on Health Pathways recently. 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. 2023 STATEMENTS - Not yet audited 2022 STATEMENTS 2021 STATEMENTS