Search Results

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. Wear your story. Support your community. < Back Launch of our Crash Wear merch range 18 Jul 2025 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. Wear your story. Support your community. 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 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. https://mecfscanterbury.digitees.co.nz/ Previous Next

We invite you to watch Nurse Wendy Dragt’s talk about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and its Management – recording now available on our youtube channel. < Back ME/CFS and its Management Presentation 8 May 2025 We invite you to watch Nurse Wendy Dragt’s talk about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and its Management – recording now available on our youtube channel. We invite you to watch Nurse Wendy Dragt’s talk about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and its Management – now available on our youtube channel https://youtu.be/s8MV6lisdmM This presentation covers: ✦ What we know about ME/CFS ✦ The diagnostic criteria for ME/CFS ✦ Impacts and severity spectrum ✦ Key management principles and approaches ✦ How to make a meaningful life This recording provides useful information for people with ME/CFS, their health team, and whānau. At 69 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. Previous Next

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

Volunteer Outreach Services We have a growing team of wonderful volunteers in our Outreach Service who provide one-off or regular practical support for people affected by ME/CFS. Our kind volunteers help with tasks such as housework, dog-walking, gardening, friendly company, and technical support. This support can help clients to stabilise symptoms, manage obligations and domestic activities, and reduce isolation. We won’t always have a volunteer to match with you in your area, but if you let us know what your needs are, we can certainly try to find someone. All our volunteers have a clean result from a Police Check, are given information about ME/CFS, and sign confidentiality and other volunteer agreements. A quick note to set expectations of our Outreach Service... T here are some factors affecting the capacity of this service currently: It is coordinated by a part time volunteer, and sometimes the coordinator position itself is vacant. It takes time to onboard volunteers and then to match them with clients that need the help offered in the suburb needed. Volunteers do not always stay for long, as they may move onto employment or further study. However, please do put your name on the list if you are interested in this support. We can't guarantee we will find a volunteer for you, but it makes it possible if we know what your needs are. To access this service: To refer yourself to the Volunteer Outreach 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. FILL OUT OUR MEMBERSHIP FORM CONTACT US If you are already a member, send us an email about the help you are needing.

Management approaches for ME/CFS include identifying the most problematic symptom first and exploring options for improvements, along with implementing pacing and activity management.​ We have collated some information for you. Managing Specific Symptoms We aim to collate information here to help you manage your ME/CFS and the specific symptoms that may be present, particularly as our team deliver presentations on these topics. 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. Overview of ME/CFS and its Management We invite you to watch our presentation about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and its Management on our YouTube channel. This presentation covers: What we know about ME/CFS The diagnostic criteria for ME/CFS Impacts and severity spectrum Key management principles and approaches How to make a meaningful life Management approaches include identifying the most problematic symptom first and exploring options for improvements, along with implementing pacing and activity management. There is also a pdf of the slide deck available. Orthostatic Intolerance (OI) Orthostatic Inolerance (OI) is an umbrella term for several conditions in which symptoms are worsened by assuming and maintaining an upright posture. When someone with OI stands up or sits for too long, they may experience symptoms such as light-headedness, dizziness, spatial disorientation, feeling faint, sweating, headaches, nausea and palpitations. Many symptoms improve with lying down, although some take hours or days to resolve. People with ME/CFS may have low OI, or meet the criteria for the more severe Postural Orthostatic Tachycardia Syndrome (POTS) or Neurally Mediated Hypotension (NMH). Diagnosis involves ruling out other causes, a Tilt Table or NASA Lean test, and assessments such as Hours of Upright Activity (HUA). OI symptoms is one of the most treatable symptoms associated with ME/CFS and it is usually possible to increase functional capacity through the following management approaches: Increase blood volume by drinking water and consuming more sodium (if safe for you to do so). Provide mechanical support by using compression garments and postural counter manoeuvres (movement that moves the blood up the legs to the heart). Make lifestyle adjustments such as avoiding overheating, alcohol, large meals. Introduce movement or gentle exercise done in a lying down or recumbent position first. We invite you to watch our talk about Orthostatic Intolerance (OI) and its Management on our YouTube channel. A pdf of the slide deck is also available. Further Reading Clinical Care Guide from Bateman Horne Centre, USA, a 98 page document published 2025. This covers the basics and common co-morbidities. Clinical Primer from IACFSME (International [Clinician] Association for CFS/ME), 2014. Particularly Section 5 Management and Treatment. Advice from ME Association UK, who are strongly evidence-based. They provide general guidance and leaflets covering various supplements, therapies and medications https://meassociation.org.uk/free-literature-downloads/ Visit our Links page for more information.

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.

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 have summarised key information here on this page. 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, so we have summarised key information here on this page. The advocates in our Work and Income Service are also available to provide confidential support to 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 refer yourself to the Work and Income Service, sign up as a member and email us to tell us what help would be beneficial, and one of our team will be in touch. Take your time reviewing the information below. 'CHECK WHAT YOU MIGHT GET' TOOL We encourage people to use the ‘Check what you might get’ tool from MSD to find out what you might be eligible for. This takes around five minutes to complete. The tool provides information about all the types of financial assistance you may qualify for and why, as well as what assistance you are unlikely to qualify for and why. COMMUNITY SERVICES CARD The Community Services Card can help you with the costs of health care and public transport. This means you could pay less on some health services, prescriptions and fares for public transport. You don’t have to be on a benefit to qualify for the card, but it is income tested. Work and Income will normally send the card to you if you are eligible. If they have not, you can apply for it online. Benefits and Allowances Work and Income have a range of benefits and allowances which have their own eligibility criteria and you will need to submit various supporting information with your application. We have a single page handout that overviews the key benefits and allowances available, and whether they are income or asset tested. Some of the benefits that may be available to you include: Supported Living Payment (SLP) MORE INFORMATION Support Living Payment (SLP) is a weekly payment for people who are severely restricted in their ability to work due to a health condition. This requires a medical certificate from your GP to confirm you cannot regularly work more than 15 hours per week for the next 2 years. We have a guidance sheet for GPs on the criteria and medical certification requirements for the Supported Living Payment. Email the link to your GP, print out the handout, or ask us to post you a printed copy. Jobseeker Support MORE INFORMATION Jobseeker Support is a temporary benefit available when a health condition is affecting your ability to work fulltime. Jobseeker Support with Medical Deferral MORE INFORMATION Jobseeker Support with Medical Deferral is available when a health practitioner has confirmed you cannot work fulltime due to a health condition. Disability Allowance MORE INFORMATION Disability Allowance can cover regular ongoing costs related to a medical or health need up to $75 per week. It is income tested. This allowance is also available for the Non-Beneficiary if all eligibility criteria are met. Here are some of the things that you may be able to get your GP to confirm that you need covered by the Disability Allowance: Doctor's fees. Prescription fees. Travel to your doctor, specialist, hospital or counsellor. Counsellor. Heating. Medical alarm rental and monitoring. Hearing aid batteries. Lawn mowing. Gardening. Special clothing requirements e.g. compression stockings. Exterior window cleaning. Special foods e.g. gluten free foods. Other treatments, such as: Chiropractor Podiatry Physiotherapy/Gym fees. Herbal supplements (e.g.pro-biotics). Unfunded prescription medications. If you want to access counselling but are already receiving the maximum Disability Allowance, the counselling fees may be able to be covered by Temporary Additional Support (see further below). We have a guidance sheet for GPs on the criteria, medical certification requirements, and example eligible costs for the Disability Allowance. Email the link to your GP, print out the handout, or ask us to post you a printed copy. Accommodation Supplement MORE INFORMATION Accommodation Supplement provides weekly assistance towards your rent, board or mortgage payments. It is income and asset tested. This is also available for the Non-Beneficiary if all eligibility criteria are met. Temporary Additional Support (TAS) MORE INFORMATION Temporary Additional Support (TAS) is a weekly payment to help with essential daily living costs when you don’t have enough money for these. It can be paid for up to 13 weeks and would need to be re-applied for after that. It is available for Non-Beneficiaries if they meet the income and asset tests, and the other criteria. Special Needs Grant MORE INFORMATION Special Needs Grant may cover one-off essential costs when you don’t have the funds. You do not need to pay this back. It is asset and income tested, and can be used for costs such as food, some dental treatment, health travel costs, medical equipment. Recoverable Assistance Grant MORE INFORMATION Recoverable Assistance Grant may cover essential costs not covered by the Special Needs Grant. This is generally paid direct to the supplier on your behalf. Repayments are automatically deducted from your weekly payments, at a rate agreed on with the case manager processing the payment. Costs that may be covered include clothing, car repairs, glasses, hearing aids. Supported Living Payment for Carers MORE INFORMATION Supported Living Payment for Carers is a weekly payment if you are caring fulltime for a person would otherwise need to receive hospital or residential-level care. Child Care Subsidy MORE INFORMATION Child Care Subsidy assists towards pre-school childcare costs and may be useful to consider accessing if you care for children while living with chronic illness, to ensure that you have opportunities to rest. Applying for Support Use the MyMSD website to submit your applications to Work and Income and to give notice of any changes. Ensure you have your MSD Client Number. This will be on your Community Services Card, Super Gold Card, or letters from MSD. If you don’t have a client number yet, use the online form to Request a client number . To register for a MyMSD account, go to www.my.msd.govt.nz/register To apply for financial assistance from Work and Income, visit the MyMSD website and click the Apply button. Remember that you can start an online application and then save it. Just come back within 20 days to complete. Once you have submitted your application, Work and Income will ask you to submit information such as evidence of costs, medical certificates, and proof of bank account and IRD number. You will normally have 20 working days to provide this. If you disagree with a decision, you will have 90 days to request a review. Please get in touch with our team to assist you with the review of the decision. Emailing Work and Income People with ME/CFS often have difficulty communicating on the phone and Work and Income offers communication by email for this situation, under their Deaf Services. When communicating by email, compose the email as follows: Set the To address to MSD_Deaf_Services@msd.govt.nz In the Subject bar type your Full Name and Client Number . Include the following information in your email: At the start, include your full name, client number, date of birth and current address, as identification. State that email contact is preferred due to Chronic Illness, limitations and difficulty talking on a phone. e.g. “I have the chronic illness ME/CFS and this impacts my cognitive abilities. I find talking and responding to questions on the phone very difficult. My preferred method of communication is by email. ” State what you want to know or what you need to contact Work and Income about. Appoint an Agent You can choose to have someone else act on your behalf in some or all of your dealings with Work and Income. This person is called an agent , and they volunteer their time. Agent for a single event: You can verbally ask to have a support person who is with you (on a phone call or at a meeting), to act on your behalf. This verbal agreement will last just for that meeting. When you want someone to act on your behalf for longer: Select the agent with care. It could be a friend or family member, MECFS Canterbury, or a benefit advisory service. You can still talk to MSD and act for yourself when you are able to. Indicate on the ‘Appointment of Agent’ form the scope of tasks that the agent can help with. This can range from making enquiries on your behalf, signing forms, right through to all interactions. (Note: We have a simplified form if you wish to appoint us as an agent.) More Information Benefit info from Work and Income www.workandincome.govt.nz/eligibility/health-and-disability/index.html www.workandincome.govt.nz/products/a-z-benefits/ MSD Policies www.workandincome.govt.nz/map MECFS Canterbury Contact our Work and Income Advocacy team . Benefit Advisory Services if you live in Christchurch or the Waimakariri district, the team at Beneficiary Advisory Services offer free advice and advocacy If you live outside our region, contact your local ME/CFS support organisation, or search www.cab.org.nz to find your local benefit advisory service. Rare Disorders NZ Work and Income information www.raredisorders.org.nz/patient-support/financial-assistance/financial-support-available-from-work-and-income

Resources and Links Take your time going through this information list. Just read or visit the content that is of interest to you. We only share the best clinically accepted and verified guidelines and information for ME/CFS and Long Covid. Be aware that a lot of content online or in books is not evidence-based, and that more research is needed to fully understand the causes and best treatments for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. What helps one person, will not necessarily help someone else. Please refer to our ‘Living with ME/CFS ’ content for practical advice on pacing and supports that may make a difference to your wellbeing and quality of life. For Patients and Whanau READ MORE For Long Covid READ MORE For Young People READ MORE For Health Professionals READ MORE For Parents READ MORE Connecting online with others READ MORE For Health Professionals Refer to your HealthPathways for regional clinical advice for ME/CFS. 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. NICE in the UK published updated guidelines for ME/CFS in 2021. CDC in the USA maintains advice and handouts about ME/CFS. Mayo Clinic in the USA have also published guidance for ME/CFS – Consensus Recommendations and Concise Review for Clinicians . Dialogues for a neglected illness project (UK) has produced a series of 15 minute videos covering different aspects of ME/CFS including Post-Exertional Malaise and the issues involved that have lead to poor care and insufficient research. M.E. Awareness NZ has curated a list of information and resources for health professionals, including Continuing Medical Education that is endorsed by RNZCGP. For Patients and Whānau Subscribe to our channel! Te Whatu Ora has provided online information about ME/CFS on HealthInfo. TAKE ME THERE The ‘What is ME/CFS? ’ video from the Bateman Horne Center (ME/CFS specialist centre), USA, is under 6 minutes long and provides a basic introduction into the IOM 2015 diagnostic criteria for ME/CFS. It is intended as education for medical providers but is also a good introduction for patients and the public. M.E. Awareness NZ has curated a list of resources for people affected by ME/CFS TAKE ME THERE Join ANZMES , the national advisory and support organisation for ME/CFS in New Zealand, to support their advocacy efforts. TAKE ME THERE The Unrest film tells the story of Jennifer Brea and others and what ME/CFS looks like behind the scenes. It also includes a history of the disease including contributions from Dr Nancy Klimas and Dr Ron Davis. Our Youtube channel has a range of recorded presentations on a variety of topics from past education meetings. E.g. Gut Health, Orthostatic Intolerance. TAKE ME THERE For Long COVID The Long Covid Support Tool , published by ME Support – NZ, is an excellent series of videos and resources. Useful for people with ME/CFS as well. TAKE ME THERE Long Covid Support Aotearoa provides information and community. TAKE ME THERE Self-guided online courses for Long COVID recovery developed by physiotherapists at Breathability, New Zealand. TAKE ME THERE Information from the Long Covid Physio , an international association. TAKE ME THERE 'What is Long COVID? (and ME/CFS?)' from the ME Association UK. TAKE ME THERE For Parents Join the private Facebook group NZ Carers for Young People with ME and related illnesses TAKE ME THERE Listening to Families , who are based in Christchurch, have produced a series of short videos designed to support and answer questions for families exploring a diagnosis of ME/CFS and management for their child or teenager. 80 minutes in total, with 19 videos from 1 to 8 minutes long, covering a range of relevant topics. TAKE ME THERE For Young People ME Support, based in Auckland, facilitate a free online Discord community for teens living with ME/CFS. Our nurses can refer you. Connecting online with others ME/CFS is a chronic complex condition that makes daily life difficult and causes social isolation. Online peer support groups can be helpful for people with ME/CFS as they can connect people who share similar experiences. People can come together online to socialise, share information and offer support to one another. It is okay to take a break from them as well, and shift our focus to other things. New Zealand based online forums: Join our online peer support community in a private Facebook group for people affected by ME/CFS or related illness who live in Canterbury or the West Coast of New Zealand (or elsewhere in the South Island). Join the friendly Canterbury Fibromyalgia and CFS/ME Group to connect and find out about informal local social catchups. Join the national online community facilitated by ME Support – NZ, who are based in Auckland. Other groups you may wish to check out: NZ M.E/CFS Catch ups for a holistic approach; For parents, join NZCare4ME for carers of young people with ME/CFS and other similar chronic illnesses (such as POTS, MCAD, EDS, and Fibromyalgia). For young people, join a Facebook community for NZ Teens/Early 20's with ME/CFS and Related Illnesses, or CFS / Fibro: Young Adults Group for people aged 18 to 35 (not very active at present). For young people (aged 12-20) living with any illness or disability in NZ and Australia, and their siblings, the Livewire community provides safe social connection and positive distraction. If you are severely unwell with ME/CFS, join the NZ Severe Facebook community. For long COVID, join the Long Covid Support Aotearoa and Long Covid Kids New Zealand Facebook communities. For fibromyalgia, join Fibromyalgia NZ Support and the Fibromyalgia & CFS NZ Support Facebook communities. For Ehlers-Dahlos Syndrome, join the national Loosely speaking - Ehlers Danlos NZ support group, the South Island support hub , or other affinity support groups . For Mast Cell Activation Syndrome, join Mast Cell NZ . International online forums: Phoenix Rising is the largest and oldest international online forum for complex chronic illnesses such as ME/CFS, fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases. It uses XenForo community platform, rather than Facebook. Science for ME focuses on scientific discussion but is also a useful place for support and advocacy. There are public and member-only areas within the forum. It uses the XenForo community platform, rather than Facebook. #MEAction, a global movement fighting for recognition, education and research for people with ME/CFS, has several international affinity groups on Facebook for people, such as pregnancy and parenting, seniors, and caregivers. For teens and young adults up to mid 20's, check out the Teens with ME/CFS and Related Illnesses, and Teens With Chronic Illnesses Facebook communities. If you have severe ME/CFS, join the international online support group. For parents of young people with ME/CFS, join the large Parents of Kids & Teens with ME/CFS and Related Illnesses Facebook community. For parents of adults with ME/CFS, join Parents of adult children with ME/CFS Facebook community. For long COVID, join COVID-19 Long Haulers Support Facebook community, and search for others.

Our Health Partners Since 2019, we have met regularly with managers at Te Whatu Ora (formerly CDHB, Canterbury District Health Board) to raise awareness of ME/CFS, discuss our services, develop educational opportunities for health professionals, and ensure that people with ME/CFS have access to standard services from the health sector when entry criteria is met. We have worked with the clinical editors of the HealthPathways, Allied Healthways and HealthInfo websites during this time to provide evidence-based information for medical professionals, allied health professionals and the public. As a result of our education programme and partnership with Te Whatu Ora - Waitaha (Health New Zealand - Canterbury), we have observed that more General Practitioners are comfortable assessing, diagnosing, and supporting people with ME/CFS. HealthPathways HealthPathways is a website that offers clinicians locally agreed information to make the right decisions together with patients, at the point of care. The guidance for ME/CFS is based on the IOM 2015 diagnostic criteria promoted by the CDC. Let your GP know that there is clinical guidance for ME/CFS on Health Pathways or give them a copy of our letter about it. HealthInfo HealthInfo is a health information website for the general public in parts of the South Island. The website has a mix of health information, including factsheets on different topics and descriptions of local health services and support organisations. It also has links to recommended websites for further reading and research. The information about ME/CFS on HealthInfo can be found here . Allied Healthways The Allied Healthways website provides guidance for allied health professionals such as physiotherapists, occupational therapists, pharmacists and psychologists. Pathways provide clear and concise guidance for assessing and managing a patient with a particular symptom or condition. Information about ME/CFS is included in the PhysioFITT programme and Chronic Fatigue topics. Our Funding Partners What we do is only made possible by the community trusts, gaming trusts, government agencies and individuals who have contributed financially over recent years to the operation of MECFS Canterbury. Please accept our gratitude for helping us to make a difference for our local ME/CFS community. Air Rescue Community Services COGS - Community Organisation Grants - Christchurch The Jansen Trust Mainland Foundation Rano Community Trust The Trust Community Foundation Aotearoa Gaming Trust COGS - Community Organisation Grants - West Coast Kiwi Gaming Foundation NZ Community Trust Rata Foundation Trillian Trust Christchurch Casino David Ellison Charitable Trust The Lion Foundation One Foundation Riccarton Rotary Trust Aoraki Christchurch City Council - Strengthening Commuunities Grant Grassroots Trust Lotteries Community Canterbury Pub Charity Roy Owen Dixey Trust West Coast Community Trust And individuals who support us with private donations Our Business Partners We are grateful to the companies who support us with discounted software or services.

It is incredibly challenging living with a disabling chronic illness like ME/CFS as it significantly reduces our options and the quality of our life. It is natural that we would grieve the losses and find it difficult to cope with at times, especially if we are very unwell and not receiving much support. There are services and strategies that will help you to cope. Mental Wellbeing It is incredibly challenging living with a disabling chronic illness like ME/CFS as it significantly reduces our options and the quality of our life. It is natural that we would grieve the losses and find it difficult to cope with at times, especially if we are very unwell and not receiving much support. Find and develop strategies that help you cope: Schedule in activities that you enjoy or that help you feel connected to others. Stress will worsen any illness, and ME/CFS is no exception, so look for ways to minimise stressors. Allocate time for friendships with people who understand and care. Explore practices like mindfulness and self-compassion (see Strategies section below). Talk to your doctor about accessing counselling or other mental health services (see section below). Consider coming along to our in-person and online meetings , or joining our Facebook support group , to connect you with people who understand about life with chronic illness. We offer some suggestions for accessing counselling and developing strategies below. There are a range of mental health helplines and support services available in New Zealand and many of them are free. Give yourself permission to use them if you need to. The Mental Health Foundation of NZ provides a list of support options here . Need to talk? Free call or text 1737 any time for support from a trained counsellor. The Health Info website provides information about 'Getting help for a mental health issue' from Health NZ. This describes some of the mental health supports available in the South Island, including those available through your GP. To see a counsellor privately, you may be eligible for financial support to cover the fees from Work and Income, even if you are already receiving a Disability Allowance (see section below). Accessing mental wellbeing support Questions to ask a prospective therapist It is appropriate to ask a prospective service or therapist some questions before you start working with them, or during the first session. Consider asking: Ask what they understand about ME/CFS, or the chronic illnesses you have, to confirm that it matches current international guidance e.g. are they aware of the ME/CFS guidance on Health Info , from NICE (UK) or CDC (USA)? Are they familiar with the impacts of living with an invisible chronic illness which changes daily life and has no approved treatment? Describe what you are wanting support with and ask them to confirm they have relevant experience and interest in supporting you. You may have identified that you want support with issues, such as stress and uncertainty, adjustment, stigma, hopelessness, sleep problems, relationship challenges, grief and loss, identity, parenting, anxiety, and other mental health problems. Confirm what the funding arrangements are for the therapy. Confirm that the therapy can be offered in a format that meets the severity of your illness e.g. telehealth, phone, their office, your home, text. Wellbeing services through your medical centre Many General Practice clinics now have Health Improvement Practitioners (HIPs), Health Coaches and Support Workers through the Access and Choice programme . These team members are available to deliver a wide range of mental wellbeing support and tools, without long waits and often on the same day, and the services are free. Health Improvement Practitioners (HIPs) are experienced mental health clinicians who work with people of all ages and their whānau. They may have a degree in psychology, psychotherapy, mental health nursing, social work, occupational therapy or be a DAPAANZ registered counsellor. HIPs help people with any issues impacting on their health and wellbeing. Sessions are brief (15-30 minutes), normally in-person, and focus on what is important to you, today. At your first session you will get some strategies and a plan. There are no limits to how often you can see the HIP. Talk to your GP or ring your medical centre to find out the best way to get seen by a HIP who has an understanding of ME/CFS and life with chronic illness. View the Map of practices in Canterbury that have a HIP available. Other Brief Intervention Talking Therapy (BITT) options are also usually available. Ask your medical centre to refer you for free short-term support with your mental wellbeing. BITT therapists are registered mental health professionals and telehealth options may be available. Counselling by telehealth with Pūawaitanga If you are wanting to try some talk therapy, you may want to consider the short-term counselling offered via telehealth by Pūawaitanga. It is free for people over 18 who are on a Work & Income benefit or who hold a Community Services Card. If you don’t meet the criteria for free services, you can also pay to access the service. The sessions are offered through phone or video call between 9am-9pm, 7 days a week. There is no waitlist and first appointment is usually within five days. The number of sessions is flexible, depending on need. Pūawaitanga have confirmed they have counsellors who have experience offering support for long term health concerns, and that this can be requested in the referral. Self-refer through their website www.puawaitanga.nz or call 0800 782 999. Ask to be assigned with one of their trained professionals who is familiar with the impacts and grief of chronic illness. Counselling for under 25s with Gumboot Friday Gumboot Friday provides two free counselling sessions for anyone aged 25 and under who needs the support of a qualified practitioner, including counsellors, psychologists, psychotherapists, and art therapists. You can search their directory and select up to three counsellors who you’d be willing to talk to and then send them a message. Sessions can be face to face, online or by phone. “Remember, there’s no shame in asking for help – it’s just a conversation.” Aoake te Rā Aoake te Rā , also known as the Bereaved by Suicide Service, is a free service that gives 6 to 10 free sessions to support individuals and whānau to navigate life after suicide loss, whether recent or a long time ago. If you have lost someone to suicide, it may be impacting your physical health as well. Experienced therapists can support you to honour the grief and to explore finding a place for it. Private Counselling and Psychologists You can find a counsellor through the directory from the New Zealand Association of Counsellors (NZAC ). You can search for counsellors in your region and what they specialise in e.g. chronic illness, chronic fatigue syndrome. Most counsellors can offer telehealth sessions. You may have to pay part or all the cost. Health Psychologists seek to help people cope with the emotional and psychological impacts of adjusting to living with chronic physical health problems, and to foster hope for the future. Search the NZ Psychological Society directory or use a search engine to find the websites of psychologists. Employee Assistance Programmes (EAP) Some employers offer employee assistance programmes (EAP) to their employees and this may also be available to family members. An EAP is a confidential service that your employer pays for to give employees access to qualified, registered and experienced professionals. An EAP therapist can help you talk through issues affecting your wellbeing. Talk to your manager or human resources representative about whether your employer offers an EAP. Funding from Work and Income You may be eligible to apply to have the costs of ongoing mental health support covered by the Disability Allowance (DA) or the Temporary Additional Support (TAS) allowance from Work and Income. You don’t have to be on a benefit to qualify for the DA, but you and your partner cannot earn more than set income limits. The TAS has both income and asset tests and needs to be applied for every 3 months. Further Information About Services The Family Services Directory from MSD also lists a range of mental health services. Additional resources from the Mental Health Foundation of NZ include: Support for Myself is a list of resources including strategies for recovery. Accessing Mental Health Services covers finding a GP, community mental health services, how to find a therapist or professional, and finding a therapist privately, and community support groups. Developing strategies for mental wellbeing Reasons for prioritising self-care strategies Looking after our mental wellbeing often helps our symptoms to stablise and our health to improve. Low mood can sometimes be part of post-exertional malaise (PEM), so if the PEM episodes can be reduced, your mood may improve as your symptoms become more stable. Use our guidance for Activity Management to pace as well as possible given your circumstances. With ME/CFS and Long Covid, our autonomic nervous system might become dysfunctional, or dysregulated. This autonomic system includes our sympathetic nervous system (fight or flight) and parasympathetic nervous system (calm/rest/digest). Your body may have trouble moving into the rest state, which can make your body feel that it is in danger or anxious. Along with our tips at the top of this page, it can be really helpful using mindfulness, breathing, gentle stretches or relaxation techniques during each day to calm down your nervous system. Self-directed Online Courses and Resources There are many courses and online resources that you can explore at your own pace. A selection of courses... Free courses and resources for New Zealanders covering anxiety, depression, and more www.justathought.co.nz/courses Free and paid content from Breathworks, including mindfulness for chronic illness www.breathworks-mindfulness.org.uk/listing/category/self-guided-courses Other resources... The NZ Health App library from Healthify , highlights apps for mental health and wellbeing, mindfulness, and more. Some apps are free, others have a cost. Search our library catalogue for books that might support your mental wellbeing. We can post books out to you at not cost. Self-Compassion Self-compassion is a vital practice that can help us to reduce stress and increase our ability to enjoy what we can in difficult circumstances. Self-compassion is treating ourselves with the same care, kindness and concern that we would give a friend, when they are in pain or difficulty. It involves exploring soothing touch and soft vocalisation which release oxytocin and endorphins and help to reduce cortisol and relieve pain. Self-compassion also involves setting appropriate boundaries to protect our property, our time, or our emotional, mental and physical well-being. Kate Brandram-Adams, from Mindfulness North Canterbury, presented a workshop for us on this topic. Watch the recording here . For more information: Dr Kristin Neff website: www.self-compassion.org/self-compassion-practices Mindfulness Mindfulness is a practice that can help us to cope with the impacts of living with a chronic illness such as ME/CFS. It may enable us to notice changes to our symptoms sooner and give us an opportunity to bring a more compassionate response, rather than pushing through. It can also be useful for taking our attention away from our symptoms and may help to calm our autonomic nervous system (ANS). Di Robertson, a mindfulness mentor, has previously led a presentation and practice session for us. Watch this on YouTube. For more information: Mindfulness on Healthify healthify.nz/hauora-wellbeing/m/mindfulness Mindfulness Apps: www.headspace.com www.insighttimer.com Mindfulness Training App: www.themindfulnessapp.com Courses: MBSR (Mindfulness Based Stress Reduction ) Finding Resilience Elizabeth Hamilton, a social worker and counsellor, has talked to us about finding resilience when debilitating illness brings many changes to our lives, along with loss, and grief. Being aware of our circle of control and approaches for living through and with loss and grief can make a difference. We invite you to watch the recording of Elizabeth's session on YouTube. Te Whare Tapa Whā Te Whare Tapa Whā is a wellbeing model developed by leading Māori health advocate Sir Mason Durie in 1984. The model describes health and wellbeing as a wharenui/meeting house with four walls. These walls represent taha wairua/spiritual wellbeing, taha hinengaro/mental and emotional wellbeing, taha tinana/physical wellbeing and taha whānau/family and social wellbeing. Our connection with the whenua/land forms the foundation. When all these areas are in balance, we thrive. When one or more of these is out of balance our wellbeing is impacted. Occupational Therapist Sarah Phipps led a presentation and workshop for us and highlighted some specific strategies for people with ME/CFS, including finding ways to live with loss. You can watch the presentation on our YouTube channel.

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

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