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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. With Nicola Stokes, our Manager, Rose forms a part time Leadership Team to manage our organisation and services. Nicola McDowell Secretary We have had the privilege of having Nicola on our committee since November 2021. Nicola brings the lived experience to our discussions and written material, as she has had ME/CFS and Fibromyalgia since 2003. Her health has significantly interrupted her professional career as a biologist, teacher, and librarian, but she has enjoyed volunteering and contributing to a variety or community organisations over the years. 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 funding to sustain and grow the support that is available to 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 avid follower of new ME/CFS research (which he blogs about) and contributes to the quality of our written material and awareness raising activities. Jaya Mangalam Gibson Jaya joined our Board in December 2025, and brings experience in marketing, as mentor for startups, and on committees for art development initiatives. Jaya lives with Fibromyalgia. 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. Angus Mackay, Science Advisor Dr Angus Mackay joined us as Science Advisor in April 2024. The role is designed t o support our staff and our services by providing evidence-based scientific information on ME/CFS. This advisory role is non-clinical. Angus brings both the ability to carry out in-depth reading of published research, and also, a personal understanding of ME/CFS having developed the illness in 1995 after contracting glandular fever. Angus graduated with a PhD from the University of Otago in April 2023 after publishing several papers on his literature /theory-based neuroinflammatory hypothesis for ME/CFS that is also applicable to Long-COVID related post-viral fatigue syndrome (same model, different trigger). Operations Staff Nicola Stokes Manager Nicola Stokes started in the role of part time Manager in June 2021. Prior to this she had many years of working in Community Health in the Canterbury region, both in clinical and management settings. Nicola 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. Beth Intern Psychologist Beth is a registered Intern Health Psychologist working with us for 2025. She is an experienced mental health and trauma therapist and has a strong foundational knowledge of ME/CFS and Long Covid. 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. Rose-elle Work and Income Advocate Rose-elle is a social work student and joined our volunteer Outreach team in 2022. She moved into a part time Work and Income Advocacy role for us in 2023. 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. She responds to email and phone queries, looks after our library, helps prepare documentation, plus a wide range of other tasks. 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. Rizki Projects Support Rizki joined us in this volunteer role in December 2024. Rizki processes our new member requests and helps to develop various new documents. 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. 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.. 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 Christchurch Support We are looking for volunteers to be our Client Outreach and Supports in Christchurch. 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. 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. 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. 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. 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

We exist to improve the wellbeing of people and whānau affected by ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) and Long Covid in Canterbury and the West Coast. MECFS Canterbury provides free information, validation, clinical support, connection, practical support and advocacy. Welcome to ME CFS CANTERBURY Support, advocacy and education for people affected by Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Long Covid in Canterbury and West Coast What's happening? Upcoming Events We host a range of different events around our region, both online and in-person. Sometimes we invite expert speakers, other times we may have a topic for discussion. Every meeting is an opportunity to share information and to connect with other people who understand life with a chronic illness. READ MORE How we help Our services are available to people living with ME/CFS and Long Covid who live in Canterbury and the West Coast, and also to their whānau. We operate a Registered Nurse Service to provide support with diagnosis and management, a Volunteer Outreach Service to provide limited practical help, plus more. READ MORE Updates We share news relevant to our ME/CFS community and the people who support them. This may include latest research and management guidance, updates about our organisation, and news about other services and aids that may help to improve quality of life. READ MORE Who are we? We are a community health and clinical service organisation for people affected by the debilitating illness ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) and Long Covid. We exist to improve the wellbeing of people and whānau affected by ME/CFS in Canterbury and the West Coast by providing information, validation, clinical support, connection, practical support and advocacy. We also provide education and support to health professionals and the wider community to improve the quality of care available for those affected by ME/CFS. LEARN MORE ABOUT US 1985 2682 132 ~ 0.4% Year Established People with ME in Canterbury ( *estimate) People with ME in West Coast (*estimate) *Conservative estimate of 4 people in 1000 have ME/CFS pre Covid-19 A slide introduction to ME/CFS 1/11 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.

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

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. The advocates in our Work and Income Service provide confidential support to help you to access any assistance that you are eligible for from Work and Income. Our Work and Income Advocacy 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. '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. 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). 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

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.

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.

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.

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. M.E. Awareness NZ has curated a list of information and resources for health professionals, including Continuing Medical Education that is endorsed by RNZCGP. 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. 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.

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

Complaint Process We are committed to providing appropriate and considerate support and advocacy for people affected by ME/CFS and to providing a positive working environment for our staff. We encourage anyone to get in touch with us to let us know if anything has not gone well so that we can put things right and improve for the future. We welcome this feedback in the form of a formal complaint, or as informal comments. Our definition of a complaint: An expression of dissatisfaction from an individual or a group with the standard of support, service, actions, policy, or position of MECFS Canterbury, or our employees or volunteers. How to complain: In the first instance, please contact the person that the complaint relates to. If the matter cannot be resolved, or if you would prefer, please prepare a written description of your complaint, and send to the Manager, or if the complaint relates to the Manager, send to the Chairperson. You will find our email and postal addresses on the Contact Section of our website. What to include in your complaint: What went wrong When and where it happened Who was involved What you want from your complaint Your name, address, and contact details (telephone and/or email). Unless you wish to remain anonymous and accept that this will result in limitations on our investigation and response. You have the right to expect that: Complaints will be treated with appropriate confidentiality. Information will only be shared with people necessary to complete the investigation into the complaint and to determine our response. You will always be treated with respect. At any point, all parties have the right to have their whānau support and/or supervisors and/or advocate present in any meetings related to the complaint. What happens when you complain? The person you have raised the complaint with will discuss the complaint with you within two working days of them receiving the complaint. Please be aware that the majority of our team work part time, so there may be a delay in your complaint being received. All complaints are reported to the Manager within 24 hours of receipt. For matters involving the Manager, the complaint will be reported to the Chairperson. A formal investigation and response process will be initiated if you or the person contacted require it: We may be in touch again to ascertain further information or facts and are likely to contact any other people involved. We will tell you when we plan to come back to you with a response. An independent mediator will be engaged if needed. We will provide a full and formal response in person and/or by letter if this is appropriate or requested. Our response will detail findings of our investigation and state what actions and changes have been put in place. If the matter is significant, the complaint and response will be tabled at the next Committee meeting in a confidential manner. What happens if I am not satisfied? If we are unable to resolve your complaint, you may take your complaint to the Health and Disability Commissioner or Charities Services .

< Back NICE releases new guidance for ME/CFS 28 Oct 2021 The National Institute for Health and Care Excellence (NICE, UK) has today, Friday 29 October 2021, published the guideline for ME/CFS: diagnosis and management, after a robust 3 year review process. New NICE guideline creates hope - a paradigm shift in the care of people with #MEcfs Extracts from the Science for ME press release... "The National Institute for Health and Care Excellence (NICE, UK) has today, Friday 29 October 2021, published the guideline for #MyalgicEncephalomyelitis (or encephalopathy)/ #chronicfatiguesyndrome : diagnosis and management." "The guideline replaces the existing clinical guideline published in 2007 and aims to improve awareness and understanding about ME/CFS, provide guidance on when to suspect it (to enable earlier diagnosis), and includes recommendations on access to care, symptom management and care planning." "NICE staff and the members of the guideline committee have worked for over three years to carefully examine the evidence... The guideline is a publication of international significance, providing an example of good practice that will influence ME/CFS care around the world." - Including here in New Zealand. "The guideline makes it clear that graded exercise therapy (GET) should no longer be offered to people with ME/CFS, and that both cognitive behavioural therapy (CBT) and therapies based on physical activity are not curative. This is based on a review of the evidence, which rated the outcomes for studies of these interventions all of low or very low quality. This is a welcome and significant, evidence based change in approach from the 2007 ME/CFS guideline, in which CBT and GET were central to treatment. Link to the new NICE guidelines:  https://www.nice.org.uk/guidance/ng206 Previous Next

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