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ME/CFS can greatly reduce our ability to do things other people may take for granted. Our world is largely structured around working, and for many people with ME/CFS this may not be an option. In this article we discuss the realities of working with ME/CFS. Working with ME/CFS ME/CFS can greatly reduce our ability to do things other people may take for granted. Our world is largely structured around working, and for many people with ME/CFS this may not be an option. But for people with mild or moderate ME/CFS, it may be possible to work anywhere from a few hours a week to full-time. Often this requires the person with limited capacity to choose between working and other aspects of life, such as housework, childcare and family responsibilities, rest and social needs. So, if working takes so much from our already limited lives, why work? In our current environment finances are a big motivator for everyone, but income isn’t the only thing we get from working. A job can provide us with social connection, a sense of purpose, goals, and a way to contribute to our families and communities. Chronic illness can be isolating, so people with ME/CFS who are able to work even a few hours a week can benefit from a way to maintain a connection to the larger world around them. Prioritise Your Health and Wellbeing Up Be realistic about whether you can safely work right now given your family obligations and illness severity. When we are unwell with ME/CFS, we need to avoid pushing ourselves and triggering post-exertional malaise, as this approach gives your body the best chance to improve. Many of us must remain focused on our basic activities of daily living. It is important to prioritise this over work, because work is only one aspect that gives us quality of life. Be conscious of your limits and be kind to yourself as you work through these considerations. What to do when you become unwell Up When you first develop ME/CFS or Long Covid or enter a period of more significant illness than usual, it’s important to look after yourself and learn to manage your symptoms. You may want to “push through” and try to maintain the same level of activity, but this can lead to a worsening of symptoms and delay recovery. Where possible, discuss leave options and a gradual return-to-work plan with your health provider and employer. Taking time off work in the initial stages of illness followed by a gradual return to work may help support long-term stability and symptom management. Once you have had time to recover and adjust, it is ideal to return to work gradually rather than all at once. The goal of resting and pacing your return to work is to achieve a maintenance phase, where you can consistently manage your hours and work demands. Keep in mind that this may look different than you are used to. You may need to reduce your hours or take advantage of possible workplace accommodations to make work maintainable for you going forward. Unfortunately, we all know that achieving stability doesn’t mean you will never be unwell again. ME/CFS and Long Covid can be episodic in nature, requiring multiple periods of time off or ongoing adjustments to workplace support and personal symptom management. Because of this, it is important to identify how much you’d like to disclose to your workplace, when to tell them, and what you could gain from doing so. Ideally, a collaborative and supportive relationship with your employer around your disability allows you to maintain work effectively, and your employer to access your full value as an employee. Deciding whether to disclose a disability or health condition at work is a personal choice. Factors such as workplace culture, the nature of your role, and whether accommodations are required may influence your decision. Some people choose to disclose early, while others wait until support is needed. Workplace Accommodations Up If you do share your situation with your employer, they may be legally required to provide you with reasonable accommodations . These are adjustments that can be made in the workplace without causing significant disruption for the employer, that would allow you to participate to your fullest ability. Some accommodations that may benefit people with ME/CFS are: Flexible work hours Part-time work options The option to work from home where reasonable Written or recorded instructions, meeting notes etc The option to work seated The opportunity to rest during work breaks Mobility aids or assistive devices Accessible bathrooms and bathroom breaks A quiet workplace, or noise-cancelling headphones or earplugs Improved ventilation, open windows, or reduction of scented products in the workspace Allowing the employee to wear a mask of their choosing in the workplace to help reduce instances of sickness See our December 2024 newsletter for more information on potential accommodations and navigating a career with ME/CFS or long covid. Employment Law for Health and Disability Up While discrimination based on disability is unlawful in New Zealand, we know it does still happen. New Zealand employment and human rights legislation provides protections against disability discrimination and supports the right of disabled people to participate in employment on an equal basis with others. Understanding these protections can help you advocate for yourself and access support when needed. Whaikaha (The Ministry of Disabled People) has created a summary of your rights here . This is based on several acts and codes defining the rights of disabled people in New Zealand law, including: Health and Safety at Work Act 2015 | New Zealand Legislation Health and Disability Services (Safety) Act 2001 | New Zealand Legislation Health and Disability Commissioner (Code of Health and Disability Services Consumers' Rights) Regulations 1996 | New Zealand Legislation Human Rights Act 1993 | New Zealand Legislation If your rights have been breached and you are unable to resolve this directly with your workplace, you can seek free legal advice and advocacy from Aotearoa Disability Law . Additionally, you can make a complaint to the Human Rights Commission , who provide free information and dispute resolution services. Finding and Exploring Work Options Up Workplaces When searching for work, finding supportive and accessible workplaces is difficult but incredibly important. Certain workplaces will have visual displays to indicate their commitment to supporting their disabled employees. Sunflower symbols from Hidden Disabilities Sunflower indicates that a business or workplace has taken steps to improve awareness of hidden disabilities and may be more receptive to discussions about accessibility and support needs. Businesses participating in the Hāpai Access card programme may also be more understanding of those with disabilities. According to Hāpai card user submissions to the Hāpai card website, 310 organisations and businesses are now onboard with the Hāpai card. The Accessibility Tick Program supports workplaces and organisations to be more accessible and inclusive spaces for disabled community members. They offer a programme to organisations to become more accessible and equitable. When an organisation reaches the end of their journey they are awarded with an Accessibility Tick. List of organisations involved with the program are on the Accessibility Tick website . If you are already receiving a main benefit from Work and Income, such as Jobseeker Support or the Supported Living Payment, you can access a range of employment services free of charge. Workbridge , for example, can provide free support to connect you with disability-friendly employers. Home Business Options Sometimes going out and working isn’t an option and other avenues may need to be explored. Your skillset may allow you to work from home as a freelancer or run your own small business. Before exploring the idea of an at home business it is important to consider potential drawbacks: Inconsistent or insecure income Comparatively limited social interaction No sick days or annual leave Keeping track of and reporting income to Inland Revenue adds to your workload Blurred separation between work and home If a home business is right for you, there are several options to consider: Freelancing, such as writing, IT and web design, accounting and more can be advertised through sites like Zealancer and Unicorn Factory Arts and crafts Baking In-home beauty services Paid surveys Pet sitting/Plant sitting/House sitting Reselling goods on TradeMe or Facebook Marketplace

About ME/CFS Myalgic Encephalomyelitis /Chronic Fatigue Syndrome WHAT IS ME/CFS GETTING DIAGNOSED DIAGNOSTIC CRITERIA SEVERITY ME/CFS AND LONG COVID

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 .

Management approaches for ME/CFS include identifying the most problematic symptom first and exploring options for improvements, along with implementing pacing and activity management.​ We have collated some information for you. Managing Specific Symptoms We aim to collate information here to help you manage your ME/CFS and the specific symptoms that may be present, particularly as our team deliver presentations on these topics. DISCLAIMER: MECFS Canterbury does not provide recommendations for any treatments for your particular situation on this website. Any advice, either explicit or implied, is not intended to replace the qualified medical advice that is necessary for each individual. Please discuss any lifestyle and treatment changes with your doctor first. MECFS Canterbury does not accept any responsibility for any treatment undertaken by readers of any content or for any error or omission in connection with an article or content published on this website. Overview of ME/CFS and its Management We invite you to watch our presentation about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and its Management on our YouTube channel. This presentation covers: What we know about ME/CFS The diagnostic criteria for ME/CFS Impacts and severity spectrum Key management principles and approaches How to make a meaningful life Management approaches include identifying the most problematic symptom first and exploring options for improvements, along with implementing pacing and activity management. There is also a pdf of the slide deck available. Orthostatic Intolerance (OI) Orthostatic Inolerance (OI) is an umbrella term for several conditions in which symptoms are worsened by assuming and maintaining an upright posture. When someone with OI stands up or sits for too long, they may experience symptoms such as light-headedness, dizziness, spatial disorientation, feeling faint, sweating, headaches, nausea and palpitations. Many symptoms improve with lying down, although some take hours or days to resolve. People with ME/CFS may have low OI, or meet the criteria for the more severe Postural Orthostatic Tachycardia Syndrome (POTS) or Neurally Mediated Hypotension (NMH). Diagnosis involves ruling out other causes, a Tilt Table or NASA Lean test, and assessments such as Hours of Upright Activity (HUA). OI symptoms is one of the most treatable symptoms associated with ME/CFS and it is usually possible to increase functional capacity through the following management approaches: Increase blood volume by drinking water and consuming more sodium (if safe for you to do so). Provide mechanical support by using compression garments and postural counter manoeuvres (movement that moves the blood up the legs to the heart). Make lifestyle adjustments such as avoiding overheating, alcohol, large meals. Introduce movement or gentle exercise done in a lying down or recumbent position first. We invite you to watch our talk about Orthostatic Intolerance (OI) and its Management on our YouTube channel. A pdf of the slide deck is also available. Further Reading Clinical Care Guide from Bateman Horne Centre, USA, a 98 page document published 2025. This covers the basics and common co-morbidities. Clinical Primer from IACFSME (International [Clinician] Association for CFS/ME), 2014. Particularly Section 5 Management and Treatment. Advice from ME Association UK, who are strongly evidence-based. They provide general guidance and leaflets covering various supplements, therapies and medications https://meassociation.org.uk/free-literature-downloads/ Visit our Links page for more information.

Support the business activities of our chronically ill community We are delighted to showcase some of the businesses and other activities of our chronically ill community. When someone lives with a chronic illness like ME/CFS, a home-based business might be the best option, as it is likely to enable the flexibility to rest when it is needed and to schedule activity carefully. Our community would welcome your support! Click on the images below to view their website or other social media. If you are a member of MECFS Canterbury and have something you would like to promote (e.g. an exhibition, a book, home based business or hobby) please email us. We would love to hear about it and consider it for promoting here. DISCLAIMER: We have no formal relationship with the business activities listed on this website page. Links to these activities are included for convenience. ME/CFS Canterbury / West Coast is not responsible for the currency or accuracy of content on such websites and the inclusion of such links does not imply endorsement by MECFS Canterbury of the linked website or its provider, products and services offered. Readers are advised to take their own appropriate due diligence steps prior to engaging with the businesses and individuals listed. @fmm.stones Hand painted stones Fiona paints stones with beautiful designs and colours, and then seals them. There is also a range of gorgeous ladybugs. Great for small gifts, to put in fairy gardens, Christmas stockings, pot plants, etc. Or to leave in a public park for others to find. Katie Cowan Personal development coaching Katie works with people on the things they are struggling with or hoping for, with a particular focus on those seeking post-traumatic flourishing (including after/amidst chronic illness), people at a crossroads or new chapter, and people wanting to play bigger in their lives. Allyssia's Designs Hospital and travel kits & supplies Allyssia creates hospital, emergency and travel kits just for you or whānau. She has a range of premade kits but you can also select exactly what items you need and select the pouch or toiletry bag you want. Saskia Grace Life coaching Saskia offers a safe space, guidance and practical strategies to help you gain clarity and achieve your goals. For people with ME/CFS, she understands the challenges that brings. She also offers you a discounted rate and payment plans. Resolve Consultancy Chronic illness and work Liz is passionate about helping people with chronic fatigue-related health conditions to find accommodations and approaches that enable them to continue working. She also writes for clients on various health-related topics, and is an informed speaker.

Volunteer Our volunteer team makes a huge difference to the support and services that we can offer people impacted by ME/CFS. We have volunteers who visit clients to provide practical supports such as housework and gardening tasks, walking dogs, assisting with filling forms and IT issues. Other people write articles for our newsletter or assist with our events and services in other ways. To sign up as a volunteer: We often have specific vacancies listed on the Volunteer Canterbury website for you to browse through. VIEW OUR VOLUNTEER VACANCIES ON VOLCAN Alternatively, please fill out our ‘Volunteer Expression of Interest’ form. We will be able to match you with people in need based on your location and the tasks you are willing to help with. FILL OUT OUR VOLUNTEER FORM For existing volunteers: After each client visit, please use the Outreach Event Form linked to below, to let us know what support was provided and when. There is also space to indicate future plans and to provide feedback. Remember to bookmark the website address so it can be found easily after each visit. Thank you for being involved in such a practical way with our community! COMPLETE OUTREACH EVENT FORM

Being told you have Myalgic Encephalomyelitis (ME/CFS) or Long Covid can feel overwhelming and isolating. < Back Find Support After an ME/CFS or Long Covid Diagnosis in Canterbury and the West Coast 22 Jun 2026 Being told you have Myalgic Encephalomyelitis (ME/CFS) or Long Covid can feel overwhelming and isolating. You may be struggling to find people who truly understand what you are going through, or healthcare professionals who take your symptoms seriously. If you are based in Canterbury or the West Coast of New Zealand, you do not have to navigate this alone. A Community That Gets It ME/CFS Canterbury / West Coast runs a free, private Facebook support group for people living with ME/CFS (also known as Chronic Fatigue Syndrome) and Long Covid in the Canterbury and West Coast regions of Aotearoa New Zealand. This is a space where you do not need to explain yourself. Members understand the reality of post-exertional malaise, the unpredictability of symptoms, and the frustration of conditions that are still poorly understood by many in the medical system. Join the group here: ME/CFS Canterbury West Coast Support Group on Facebook Who Is the Group For? The group is open to: People newly diagnosed with ME/CFS or Long Covid, or currently awaiting a diagnosis People who have been living with ME/CFS or Long Covid for years Carers and whanau supporting someone with either condition Whether you have mild symptoms or are severely affected, you are welcome. What to Expect This is a peer support space, not a medical advice forum. Members share experiences, practical tips, local resources, and simply the comfort of being understood. It is moderated to keep the space safe and respectful. About ME/CFS Canterbury West Coast ME/CFS Canterbury West Coast is a community organisation supporting people affected by Myalgic Encephalomyelitis and Long Covid across the Canterbury and West Coast regions. We receive no government funding. So much of what we offer this community exists because of dedicated volunteers who show up alongside our small team. We provide information, advocacy, and peer connection to help people and their whanau feel less alone and better equipped to navigate life with these complex illnesses. Ready to Connect? If you are newly diagnosed, still seeking answers, or simply looking for people who get it, we would love to have you in the group. Join the ME/CFS Canterbury West Coast Support Group on Facebook Keywords: ME/CFS Canterbury, Long Covid Canterbury, Chronic Fatigue Syndrome New Zealand, ME/CFS support group NZ, Long Covid support New Zealand, Myalgic Encephalomyelitis Canterbury, ME/CFS West Coast NZ, Long Covid West Coast NZ, CFS support Canterbury, ME/CFS diagnosis New Zealand, Long Covid diagnosis New Zealand Previous Next

Work and Income Advocacy When we live with or care for someone 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. To see a summary of relevant payments and how to access it on the Work and Income Assistance page in our Living with ME/CFS section of this website. You can also be connected to the advocates in our Work and Income Advocacy Service . They provide confidential support to people affected by ME/CFS and will help you to access any assistance that you are eligible for from Work and Income. This service is normally delivered through email, but it depends what suits you best - text, phone call, zoom call or home visits are also an option. The support may include: Helping to determine your eligibility for the different financial benefits and allowances. Assisting in filling out paperwork and applications. With your permission, acting on your behalf as your agent. Working with your GP to ensure any required medical certificates reflect the severity and impacts of your illness. Supporting you through issues with Work and Income. Advocating on your behalf with Work and Income. To access our Work and Income Advocacy Service: Please be aware that our services are only available to people in our region affected by ME/CFS or Long Covid, or those who are currently exploring this diagnosis. If that is not you, please contact Beneficiary Advisory Services (800 000 043 or office@bas.org.nz ) if you live in Christchurch or the Waimakariri District, or find your local service on the Community Law website. To refer yourself to our Work and Income Advocacy Service for people affected by ME/CFS, sign up as a member and note on the form what help would be beneficial, and one of our team will be in touch. FILL OUT OUR MEMBERSHIP FORM CONTACT US If you are already a member, send us an email about the help you are needing.

Any advice, either explicit or implied, is not intended to replace the qualified medical advice that is necessary for each individual. Disclaimer Statement ME/CFS Canterbury / West Coast does not provide recommendations for any treatments for your particular situation on this website, on our social media, or in our handouts. 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. ME/CFS Canterbury / West Coast 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, or in our other material. We have no formal relationship with the activities and organisations that we link to. Links to these activities and information are included for convenience only. The inclusion of such links does not imply endorsement by ME/CFS Canterbury / West Coast of the linked website, or its provider, products and services offered. Readers are advised to take their own appropriate due diligence steps prior to engaging with the organisations, businesses and individuals listed. ME/CFS Canterbury / West Coast is not responsible for the currency or accuracy of content on information we link to.

Connect with Us Join Us Online Community Social Media Want to help? We invite you to join us as a member to access our full range of services , to receive our news in your inbox, and to support our advocacy and education work. It is free* to become a member of MECFS Canterbury. (*We do welcome donations if that is an option for you) Please complete our membership form, either: Join online or Print PDF and post Join Us: Our Events: You are warmly invited to join us at our various events. We have regular group meetings that may have an educational, support or social focus for people affected by ME/CFS. We are also involved in hosting education events for health professionals. For information about our upcoming events, including our support and education meetings, please visit our event calendar. Check our Events Our online peer support groups are private Facebook groups that proivde an online community space for people living with ME/CFS and related conditions. They are a great place to connect, share experiences and information, and organise local social catchups. The South Island online Facebook group... The West Coast online Facebook group... Many of the people in our ME/CFS community live in isolation, with financial hardship, disability, and without appropriate support from the health and welfare systems. We need community-wide support to improve the quality of life of people affected by ME/CFS. There are a variety of ways that you can help or join our team to make a difference. Check out our list of ways to help on our website: EXPLORE WAYS TO HELP Follow and connect with us on various platforms! Facebook Instagram Linked In MeetUp We invite you to check out recordings of our educational sessions on our YouTube channel. Have a question? Get in touch with us! CONTACT US