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- World ME Day - Press Statement from ANZMES | MECFS Canterbury
As we approach World ME Day on 12th May, ANZMES have released a powerful national press statement < Back World ME Day - Press Statement from ANZMES 6 May 2026 As we approach World ME Day on 12th May, ANZMES have released a powerful national press statement As we approach World ME Day on 12 th May, ANZMES have released a powerful national press statement calling for people with ME/CFS to be taken seriously, in healthcare, in policy and in everyday life. This year’s theme “Take ME Seriously” reflects what our community has been saying for decades: ME/CFS is a complex, multi-system illness that requires recognition, accurate diagnosis and appropriate support. Thousands of New Zealanders are living with ME/CFS, many are facing barriers to care, understanding and support. This campaign is a call to change that to ensure people with ME/CFS are believed, supported and given access to the care they need. We encourage our community to take a moment to read and share this important release and join us in raising awareness this World ME Day. https://anzmes.org.nz/world-me-day/take-me-seriously-2026/ #TakeMESeriously #WorldMEDay #MECFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #EducateME Previous Next
- News (All) | MECFS Canterbury
Subscribe to our Newsletter Sign up to become a member to receive our bi-monthly newsletter. The newsletter includes information about managing and living with ME/CFS, latest research, our activities, plus more. BECOME A MEMBER VIEW OUR NEWSLETTERS Latest News We plan to share key updates about ME/CFS, Long COVID, and our organisation here. If you remember seeing a notice about new guidance or initiative in our newsletter or social media and want to revisit the details, it will be worth checking the updates listed below. 6 May 2026 World ME Day - Press Statement from ANZMES As we approach World ME Day on 12th May, ANZMES have released a powerful national press statement Read More 26 Apr 2026 Check out our display at Tūranga Library for World ME Day A big thank you to the librarians at Tūranga, the central Christchurch City Libraries Library, for helping us to profile ME/CFS for this World ME Day. Read More 22 Apr 2026 Registered Nurse Vacancy We are looking for another part time Registered Nurse Read More 22 Apr 2026 Work and Income Advocate Vacancy We are looking for another part time Work and Income Advocate to join our team. Read More 20 Apr 2026 ME/CFS Awareness Mugs for Blue Sunday 2026 Support a Cause with Every Cup Read More 20 Apr 2026 Recording for Energy Management presentation now available Nurse Wendy Dragt shares guidelines for managing our energy when we live with a broken energy system Read More 19 Apr 2026 New Primary Health Care Resource for adults with Long COVID The School of Health, Victoria University of Wellington, has published a new Long COVID resource for GPs. Epidemiologist, Dr Mona Jeffreys, talked to us about how the resource was developed and how GPs can access it. Read More 15 Apr 2026 Our April 2026 newsletter is now available! Theme for this issue is Long COVID. We highlight recent articles in the media and a new Long COVID Primary Care Resource Read More 12 Apr 2026 Blue Sunday - The Tea Party for ME Blue Sunday, created by Anna Redshaw, is a special day where people come together over a cuppa and some cake to raise awareness and funds for those living with ME/CFS. Read More 10 Apr 2026 The 2026 Crash Wear Design Competition Feeling creative and got some extra spoons? Turn them into something that speaks for our community with our Crash Wear Design Competition. We’re looking for ME/CFS or Long Covid themed designs for our Crash Wear merch, something that captures the lived experience of ME/CFS and Long Covid. Read More 29 Mar 2026 Wanting to try out seated Tai Chi? Recording of a seated Tai Chi session for people with ME/CFS is now available Read More 16 Feb 2026 Dysautonomia New Zealand Today we want to congratulate the team involved in the establishment of Dysautonomia New Zealand and their progress in becoming a registered charity. Read More 19 Jan 2026 ME/CFS a Brief Introduction A brief introduction to Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Read More 18 Jan 2026 Associated New Zealand ME Society (ANZMES) Survey 2026 Share your voice Read More 19 Nov 2025 Give-a-little Day 2nd December 2025 Radical Rest Challenge - Nominate a friend or two (or yourself) Read More 11 Nov 2025 ME CFS Canterbury Registered Nurses attend RID2025 The 4th International Conference on ME/CFS, Long Covid and Gulf War Illness Read More 31 Oct 2025 It’s our 40th Ruby Anniversary! Thank you to the individuals and funders who have supported our journey since we became a charity in 1985. Read More 8 Oct 2025 October is Dysautonomia Awareness Month Dysautonomia often appears invisible, but it has a significant impact on daily life. Read More 5 Oct 2025 Mental Health Awareness Week 5-12 October 2025 When living with chronic illness it is natural to grieve the losses and find it difficult to cope with at times. Read More 3 Oct 2025 New West Coast Peer Support Group Join our new facebook group for people affected my ME/CFS and Long Covid living on the West Coast Read More
- Check out our display at Tūranga Library for World ME Day | MECFS Canterbury
A big thank you to the librarians at Tūranga, the central Christchurch City Libraries Library, for helping us to profile ME/CFS for this World ME Day. < Back Check out our display at Tūranga Library for World ME Day 26 Apr 2026 A big thank you to the librarians at Tūranga, the central Christchurch City Libraries Library, for helping us to profile ME/CFS for this World ME Day. Visit the display in front of the lifts on the third floor to check out our information posters and some of the books that the library has that may be of interest to those with ME/CFS and living with chronic illness. The display is scheduled to run from Friday, 1st May to Sunday, 17th May. World ME Day falls on Tuesday, 12th May, but the whole of May is a time to raise awareness. The Tūranga library is located at 60 Cathedral Square, Central Christchurch. There are two mobility carparks directly outside. Free Zines Our stand has a couple of free zines by Hazel Camp at hazyhappiness.com for you to read and take away. The Things You Don’t See: Invisible Illness – life with severe ME/CFS Kind Reminders – Non-toxic positivity for when things suck a lot Our own Zine 'Five ways to support mental wellbeing for ME/CFS' is also available. Book Recommendations The Library has books that may be of interest on shelf 616 – Diseases. The call number for Chronic Fatigue Syndrome is 616.0478 . Books on Long COVID are included in the Pneumonia Covid Dewey code 616.2414 . There are books on living with long term chronic illness in 616.044 and elsewhere. Books we recommend from the Christchurch City Libraries collection include: Chronic Fatigue Syndrome/M.E. - Symptoms, Diagnosis, Management by Rosamund Vallings Classic Pacing for A Better Life With ME by Ingebjørg Midsem Dahl Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis - It's Mitochondria, Not Hypochondria by Sarah Myhill Lighting up A Hidden World CFS and ME by Valerie Free A Still Life - A Memoir by Josie George The Puzzle Solver - A Scientist's Desperate Quest to Cure the Illness That Stole His Son by Tracie White Audio Books we recommend from the Christchurch City Libraries collection include: Waiting for Superman - One Family's Struggle to Survive and Cure Chronic Fatigue Syndrome by Tracie White Breath - The New Science of A Lost Art by James Nestor The Long Covid Handbook by Gez Medinger The Yin and Yang of Self-compassion - Cultivating Kindness and Strength in the Face of Difficulty by Kristin Neff eBooks we recommend from the Christchurch City Libraries collection include: How to Be Sick A Buddhist-inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard Long Covid - Expert Advice, From Diagnosis to Treatment and Recovery : A Practical Guide for Those Affected, Their Loved Ones, and Medical Professionals by Steven Faux Our own Library MECFS Canterbury also has our own library of books that can be borrowed by our members. If you can’t get to our office or to one of our meetings, we can post these out to you along with a post-paid return bag. View the catalogue online . . Posters for our library display for World ME Day Check out our posters here. Previous Next
- Why the Godwit, the Kuaka | MECFS Canterbury
Why do we use the Godwit, the Kuaka, in our logo? Our logo depicts a flying Kuaka, the godwit. These birds show incredible endurance and are recognised for their tenacity and perseverance. Every year, as winter approaches, the Kuaka fly north to the breeding grounds of Alaska, stopping off in Korea and Japan for a rest and some food on the way. On the return journey, as our summer approaches, they fly directly to New Zealand, a trip of endurance with no food, water, or rest; nearly 12,000 km non-stop. The Kuaka fly in flocks, with birds taking turns to lead and conserve their energy in the slipstream of others. Some banded birds have made that journey 20 times and some of them come to the Canterbury coast. The Kuaka arrive back at the Avon Heathcote Estuary every spring. In the face of an enormous challenge, the Kuaka brings a spirit of endurance and cooperation, and that is what makes the Kuaka an appropriate symbol for MECFS Canterbury. Riegan, A. (2011, September 9). Flight path of E7. Science Learning Hub Pokapū Akoranga Pūtaiao The Kuaka have been seen as birds of mystery: there is a saying: ‘Kua kite te kohanga kuaka?’, ‘Who has seen the nest of the kuaka?’. The mystery of course was because the Kuaka makes their nests far away in Alaska. There’s a parallel there with our experience with ME/CFS. The illness is as real as the Kuaka, but no one yet knows what is causing it. Hopefully one day, soon, the answer to the mystery will be as obvious as the location of the Kuaka’s nests is to us now. There’s another evocative saying about the kuaka that can inspire our community: ‘Ka ngau ki te turi kakao te paringa o te tai, e tika te rere o te kuaka’ ‘The spinifex wanders along the beach like the incoming tide, the kuaka flies direct’. The big spiny seed heads of the spinifex plant move along the beach like tumbleweeds, backwards and forwards at the whim of the wind. But the Kuaka make their own way, working with purpose and as a group to achieve something remarkable. Buller, W. L. (1967). Buller’s birds of New Zealand: A new edition of Sir Walter Lawry Buller’s a History of the birds of New Zealand. Whitcombe & Tombs. It’s said that when Pacific explorers saw the flocks of Kuaka flying so determinedly and seeing that they weren’t sea-birds, they knew that there must be land to the south. So, they set off, following the Kuaka flocks, and discovered Aotearoa. We like to think that the scientists can be like those explorers, following the clues from people with ME/CFS, to make a great medical discovery.
- Meet our Team | MECFS Canterbury
Meet our Team Governance Board Rose Camp Chairperson Rose joined the MECFS Canterbury committee in 2019, with a focus on improving how people with ME/CFS are treated by the health system. Both Rose and a family member have ME/CFS, and she is currently unable to work consistent regular hours because of it. Rose has a background in software development (as a tester), and in charity administration. Greta Bond Secretary Greta joined our Board in September 2025, and brings experience as CEO of Aged Concern Canterbury and a previous project specialist role with the Canterbury District Health Board. She became Secretary of the Board in February 2026. Siju Thomas Treasurer Siju kindly joined our committee in February 2024, to help us monitor our cashflow and grants pipeline, and to participate in governance discussions. Siju brings experience in financial management overseas and is a semi-qualified Chartered Accountant. Karen Lawton Karen joined the MECFS Canterbury committee in February 2022, as a consequence of having a family member who lives with ME/CFS and its impacts. Karen has experience in writing applications for government funding for companies, in sponsorship and funding for various regional and national photographic events, and as registrar for the NZ Acupuncture Standards Authority. Her main focus for our organisation is to ensure that the organisation attracts grants to sustain and grow the support needed by our local ME/CFS community. Tom Harris Tom joined MECFS Canterbury and the Committee in April 2022. He has had CFS on and off for about 8 years. Tom trained as a psychology researcher, is an experienced muscian, and runs an AI Education company. He is an avid follower of new ME/CFS research (which he blogs about) and contributes to the quality of our written material and awareness raising activities. Ruth Keating Ruth joined our Board in January 2025, and brings experience as a lawyer working in NZ, London and Melbourne in both large firms and most recently in house as a General Manager. Ruth has a rare auto immune condition and has lived experience with Chronic Fatigue, and has had to stop working. Since 2022 she has been solely focusing on furthering her Governance career in Not for Profit entities. She is a Chartered Member of the NZ Institute of Directors. Advisors Jan Barber, Board Advisor Jan is a Clinical Pharmacist by training but since 1997 worked in various roles in the New Zealand health system, including the Health Funding Authority, General Practice Organisations and Regional District Health Board organisations. From 2011 until May 2017, she was employed by the five South Island DHBs as the General Manager of the South Island Alliance Programme Office (SIAPO). Jan also has a history of governance experience for netball charities. Jan joined our committee in Feb 2021 and made significant contributions around strategy, governance processes and recruitment. In January 2025 she resigned from our Board, but continues to provide valuable support. Richard Everts, Medical Advisor Dr Richard Everts is a hospital and community Infectious Disease Specialist and Medical Microbiologist based in Nelson who has maintained an active clinical interest in Chronic Fatigue Syndrome for 30 years. In 2025, Richard retired from seeing ME/CFS patients. In 2026, he kindly accepted the opportunity to put his experience and knowledge to use as a Medical Advisor for MECFS Canterbury. The main goal of this role is to provide senior clinical support and encouragement for our nurses, alongside reviewing our handouts and material and supporting funding applications and education activities. Please note that Dr Everts is not available for individual client appointments. Operations Staff Rose Acting Manager Rose has stepped in as Acting Manager until we have worked through our recruitment process for a new part time Manager. Rose has responsibility for developing appropriate services, building our team of employees and volunteers, and networking with other service providers. Amanda Registered Nurse Amanda joined our team in January 2023 in a part-time role. She brings experience in community nursing, where she supported people with palliative care, wound care, and chronic health conditions. Wendy Registered Nurse Wendy joined our team in March 2024 in a part-time role. She has a community nursing background and spent most of her working life in South Auckland. She has personal experience of ME/CFS having a close family member who lives with it. Rose-elle Work and Income Advocate Rose-elle joined our volunteer Outreach team in 2022 while a social work student. She moved into a part time Work and Income Advocacy role with us in 2023. Rose-elle supports people to explore their eligibility for the financial benefits and allowances available from Work and Income and to apply for and maintain these. Vacant Sponsorship Lead We are currently recruiting for a part time volunteer Sponsorship Lead. This role includes developing sponsorship opportunities and building relationships with companies who may be in a position to support our services for our chronically ill community. Vacant Volunteer Coordinator We are currently recruiting for a Coordinator for our Volunteer Outreach Service. This is an important role and involves onboarding volunteers and matching these to clients who need practical or friendly support. Mell Office Administrator Mell joined us as volunteer Office Administrator in April 2025 to support our team. Mell became a part-time employee in October 2025. She responds to email and phone queries, looks after our library, helps prepare documentation, plus a wide range of other tasks. Hannah Accounts Administrator Hannah joined us in May 2021 to be our part time volunteer Office Administrator, later moving to an employed capacity. In January 2023, she changed focus to the Accounts Administrator role and now looks after our day-to-day financial accounts. She manages these tasks while living with ME/CFS and POTS. Tamara Social Media Coordinator Tamara joined us in this volunteer role in December 2024. Tamara posts content on our social media channels to raise awareness of ME/CFS, our services and guidance for living with ME/CFS and related conditions. Desiree North Canterbury Support Desiree has been a volunteer with us since March 2024 in a Client Outreach and Support role. She helps connect people in our ME/CFS community with others and the wider community. She also provides assistance for working through a next step, developing a special interest, or just catching up with a friendly call. Desiree also helps facilitate our group meetings in Rangiora.. Jordan Christchurch Support Jordan began volunteering with us in the Client Outreach and Supports role for Christchurch in July 2025. She has a BSci in Genetics and is currenlty doing a Masters in Nursing. Jordan is available to provide assistance for working through a next step, developing a special interest, or just catching up with a friendly call or visit. Rissa South Canterbury Support Rissa has provided advice around Work and Income benefits and allowances on a volunteer part time basis for us since February 2022. In the end of 2023, she moved to Waimate and is providing local support and facilitating gatherings in Timaru for people with ME/CFS. Vacant Mid Canterbury Support We are looking for a volunteer to be our Client Outreach and Support in Mid Canterbury. This position helps connect people in our ME/CFS community with others and the wider community. The volunteer also provides assistance for working through a next step, developing a special interest, or just catching up with a friendly call or visit. They may also help facilitate our group meetings in the area e.g. in Ashburton. Vacant West Coast Support We are looking for volunteers to be our Client Outreach and Supports on the West Coast. This position helps connect people in our ME/CFS community with others and the wider community. The volunteer also provides assistance for working through a next step, developing a special interest, or just catching up with a friendly call or visit. They may also help facilitate our group meetings in the area. e.g. Westport, Greymouth, Hokitika, Reefton. Andy Video Editor Andy joined us in November 2024 as a volunteer. He edits the recordings from our educational sessions so that we can share these on our YouTube channel. Louis Newsletter Contributor Louis started volunteering with us in November 2025. He contributes to our bi-monthly newsletter and updates the content on our website. Louis has a B.A. in English and Philosophy, and has a family member living with ME/CFS. Jill Afternoon Tea Host Jill joined us in April 2022 as a volunteer. She home bakes delicious gluten free and dairy free treats for our afternoon teas at our group meetings. Stéphanie Seller of Donated Goods Stéphanie joined us in December 2022 as a volunteer to sell items that are donated to us on Trade Me. She manages the listings and sales interactions, and helps us increase our income. Volunteers We have a remarkable team of volunteers who contribute to our organisation or support people one-on-one. Some help with one-off projects and others help on a regular basis. Their support makes a real difference to the lives of the people in our ME/CFS community. FIND OUT MORE ABOUT VOLUNTEERING
- Activity Management | MECFS Canterbury
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)
- Mental Wellbeing | MECFS Canterbury
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.” Counselling from Anxiety NZ Anxiety New Zealand offers a range of accessible mental health services including a low-cost online counselling service for young people (11+) and adults who are navigating mild to moderate mental health challenges. This counselling offers a safe and supportive space to explore personal challenges, build resilience, and achieve positive goals and emotional wellbeing. It's there for you if you are experiencing anxiety, grief, life transitions, or stress. (It's not limited to only supporting people experiencing anxiety.) If you are on a low-income you may be able to access the counselling for free. Appointments are available Monday to Saturday, including after hours. Are you feeling stressed or anxious now? Anxiety NZ also offers a free 24/7 helpline ... "Here for you, 24 hours a day, 7 days a week. Give us a call" on 0800 ANXIETY (0800 269 438). 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.
- Work and Income Assistance | MECFS Canterbury
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. We also have a recorded presentation that you can watch. 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
- Lifehacks and tips | MECFS Canterbury
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.
- LINKS | MECFS Canterbury
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. Click on the section headings below to expand and view the related links. 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.
- Donate | MECFS Canterbury
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
- Practical Supports | MECFS Canterbury
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 Some operators not only provide transport but can also be booked to support you at appointments and events. We understand that the drivers from Total Care Mobility and Driving Miss Daisy can offer this companionship support. Applications can be made through Aspire Canterbury ($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 $45+GST for 3 years. They also sell a branded lanyard with a strong plastic display wallet for your card for $5 + GST and shipping. You can self-refer for the card and will need to provide evidence of your needs. Our Registered Nurse Service can also complete an application for you. Waka Ora Health Shuttle The Waka Ora Health Shuttle is a koha (donation) based community service, delivered by volunteers, that transports people to health and wellbeing related appointments, and then brings them home again. The service is coordinated by Hato Hone St John. Pick up is generally from your home (or a nearby meeting point), although the service offered varies by area. In our region, the Health Shuttle operates in Aoraki, Ashburton, Christchurch, Kawatiri, Morth Canterbury and West Coast. To find out more, visit Hato Hone St John . Hidden Disabilities Sunflower Lanyard The sunflower is a globally recognised symbol for non-visible disabilities. Wearing a sunflower lanyard lets airport staff know that you may need a little extra help or understanding when travelling. Other businesses, such as ASB, recognise the lanyard. Please bear in mind that a sunflower lanyard will not get you through queues faster or provide a personal escort or wheelchair through airports. Talk to your airline about special assistance or the use of a wheelchair while at the airport. The Sunflower Lanyard Facilities at Christchurch Airport include lower sensory bathrooms, information desks, a quiet pod, and a quiet seating area. We normally have supplies of the Sunflower Lanyards provided by Christchurch Airport or you can order directly from them. MedicAlert bracelet If you have a health condition that may result in emergency care, you may wish to consider purchasing a bracelet from the MedicAlert Foundation . The bracelet is engraved with your personal medical ID and your highest risk information to assist first responders. Responders can then use the ID to access additional information about you through the 24/7 emergency hotline service.
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