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Advocacy and Networking MECFS Canterbury connects and works with other organisations and individuals to increase awareness of ME/CFS and advocate for better services and research. We collaborate with other organisations such as the national ME/CFS association, ANZMES; Te Whatu Ora Waitaha (formerly the Canterbury District Health Board); and Te Whatu Ora Te Tai o Poutini (formerly West Coast DHB). We are available to present to groups about ME/CFS and appropriate patient-centred care and supports. Please get in touch with us if this would be helpful for your workplace or organisation.

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

What is ME/CFS? Myalgic Encephalomyelitis / Chronic Fatigue Syndrome is a serious long-term, complex, multi-system illness. It affects people’s ability to do everyday tasks. Researchers have found that people with ME/CFS have: an abnormal physiological response to activity, altered immune function, impaired energy production, and changes in gut bacteria. People with ME/CFS experience a range of symptoms and these can be worsened by any kind of effort or activity. ME/CFS affects people of all ages, ethnicities, and genders. Conservatively, it is estimated that there are more than 20,000 people affected in New Zealand (4 in 1,000). We estimate that there are at least 2,661 people in Canterbury with ME/CFS, including 362 children and young people. This number will grow as a result of the Covid-19 pandemic. How do I say Myalgic Encephalomyelitis? It helps to break it up into small syllables… My–al-gic En–ceph–a–lo–myel–i-tis Possible Causes The causes and the specific pathologies of ME/CFS are not yet understood – there just hasn’t been enough research done. ME/CFS most often starts after an infectious illness such as glandular fever or Covid-19. Other factors may also be involved for some people: family genetics, environmental toxins, physical trauma (such as a car accident or surgery), and stress (physical, mental or emotional). Some people develop ME/CFS gradually. For others, it develops suddenly after the triggering event. Diagnostic Criteria (IOM 2015) Three primary symptoms are required for diagnosis : Greatly lowered ability to do activities that were usual before the illness: This drop in activity level occurs along with fatigue and must last six months or longer (3 months in children). Worsening of symptoms after physical or mental activity that would not have caused a problem before the illness: This is known as Post-Exertional Malaise (PEM). PEM is often delayed, typically happening 24-48 hours after exertion. Some people describe PEM as feeling like they have the flu. People may be house-bound or even completely bed-bound, especially during PEM. Sleep disturbance: People with ME/CFS do not feel refreshed after a full night’s sleep. At times, people with ME/CFS may have trouble falling asleep or staying asleep, may sleep for over 12 hours a day or need daytime naps, or may have a delayed sleep onset . In addition, at least one of the following symptoms are required : Problems with cognition: Most people with ME/CFS have trouble thinking quickly and concentrating for periods of time compared to prior to illness onset; there may be trouble finding words or slurring of speech, particularly during PEM. Orthostatic Intolerance: This is a worsening of symptoms while standing or sitting upright: This includes feeling lightheaded, dizzy, weak, or faint. There may be vision changes like blurring or seeing spots. GETTING DIAGNOSED Additional Symptoms Other common symptoms : These may be presen t but are not diagnostic. Chronic pain or fibromyalgia Tender lymph nodes in the neck or armpits Digestive issues like nausea, heartburn, diarrhoea, constipation, abdominal pain Muscle pain and aches and rapid muscle tiring Joint pain without swelling or redness Headaches, either new or worsening Nerve pain, felt as stabbing, burning, tingling, pins and needles A sore throat that happens often Chills and night sweats Allergies and sensitivities to foods and medications Sensitivity to chemicals, odours, light, noise, and other sensory inputs Comorbid Conditions It is not uncommon for people with ME/CFS to have other overlapping health conditions, including: Fibromyalgia, Irritable Bowel Syndrome (IBS), Postural Orthostatic Tachycardia Syndrome (POTS), allergies and chemical sensitivities, and Ehlers-Danlos Syndrome (EDS). PREVIOUS PAGE NEXT PAGE

Buy from us We sell a range of donated and fundraiser items on TradeMe, thanks to donors and volunteers. You may find something of use to you? VIEW OUR TRADEME LISTINGS ME/CFS Awareness Pins Wearing an enamel pin can be a great way to start a conversation about ME/CFS, to talk about the work of our charity, or to share some of your journey with the illness. We have three styles available to be worn at any time, but particularly around World ME Day on 12th May each year. Order from our office. Cost is $5 per pin and posting out to you. Blue Ribbon awareness Pin Single Forget Me Not flower Pin Forget Me Not flower cluster Pin

Sponsorship If your business is interested in supporting people living with ME/CFS, we would love to hear from you. There are opportunities to make a difference by sponsoring an event, service area, operational costs and more. First Name Last Name Email Message Thanks for submitting! Send

Join us as a member We invite you to join us as a member (it is free): To access our full range of services, To receive our news in your inbox, and to support our work. If you have any questions, please do ask. CONTACT US Please complete our membership form, either: Complete the membership form below, or Print PDF and post

Ways to Help The generosity of the wider community enables MECFS Canterbury to provide our services. We welcome all sorts of contributions whether it be specific expertise, practical help, or donations of money and goods. We currently do not receive any income from government health funds. We are grateful for your interest in our organisation and assure you that any contribution makes an important impact. Help a friend with ME/CFS READ MORE Volunteer READ MORE Donate READ MORE Fundraise READ MORE Buy from us READ MORE Support businesses in our community READ MORE Bequest READ MORE Sponsorship READ MORE

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

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. 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. 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

Our Organisation MECFS Canterbury was originally established in 1985 as a society under the Incorporated Societies Act 1908. The society's goals were to support and assist people with ME/CFS in the management of this debilitating illness and with the aim of improving their quality of life. In 2024, our organisation moved to a Charitable Trust model. The society, M.E. /CFS Group (Canterbury) Inc, was wound up and all services, staff and assets were transferred to ME/CFS Canterbury / West Coast Charitable Trust. We continue to be registered as a charity under number CC32072. We currently trade under the names MECFS Canterbury and ME/CFS Canterbury / West Coast. We have grown over the years to become a professional community health and clinical service organisation, providing a range of services and supports for our community. Visit the How we help page to find out more. We serve people in the Canterbury - Waitaha and West Coast - Te Tai Poutini regions in the South Island - Te Waipounamu of Aotearoa New Zealand. These regions include thirteen District Councils. We also support students at the Southern Regional Health School, who may live in any region of the South Island. Our Strategic Plan For 2023-2028 Determine the cooperation opportunities and geographic range of our organisation Enhance the strength of our governance and organisational framework Reach, support and retain more clients and members Support our supporters: health professionals, funders, volunteers, and others Presentations to our AGMs Our Annual General Meetings are held in November of each year. These meetings provide us with an opportunity to share an overview of our service delivery and finances for the year, and to look towards the year ahead. We invite you to watch the videos of our presentation slides from past AGMs. Annual Performance Statements Our audited Financial and Service Statements provide a detailed view of our finances, outputs and activities. If this is your thing, here they are. 2023 STATEMENTS - Not yet audited 2022 STATEMENTS 2021 STATEMENTS

Work and Income Advocacy When we live with a debilitating chronic illness like ME/CFS, we may be unable to work to generate income for ourselves and our families. Depending on our family situation, other income and assets, there may be some income support available from Work and Income, a department of the Ministry of Social Development (MSD). We know it can be difficult working through the information and the application steps. 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 access this service: Please be aware that our services are only available to people affected by ME/CFS or Long Covid, or those who are currently exploring this diagnosis. If that is not you, please contact Beneficiary Advisory Services in Christchurch (800 000 043 or office@bas.org.nz ) or find your local service on the Community Law website. To refer yourself to our Work and Income Advocacy Service for people affected by ME/CFS, sign up as a member and note on the form what help would be beneficial, and one of our team will be in touch. FILL OUT OUR MEMBERSHIP FORM CONTACT US If you are already a member, send us an email about the help you are needing.