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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. We have summarised the income support available 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 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.

Newsletters In 2024, our newsletter will have been published for 39 years! Currently, there are six issues each year in February, April, June, August, October and December. The newsletter contains updates on the activities of the organisation, information about managing and living with ME/CFS, latest research, plus more. We welcome contributions. Members can elect to receive the newsletter by post and / or by email. VIEW PAST ISSUES SEND US A CONTRIBUTION

Our Kaupapa Our Vision – Tā Mātou Aronga That every person with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Long COVID in Canterbury and the West Coast lives the best quality of life possible Our Mission – Tā Mātou Whainga To improve the wellbeing of people, families and carers affected by ME/CFS and Long COVID by providing information, validation, clinical support, connection, practical support and advocacy. To improve the quality of care available for those affected by ME/CFS and Long COVID by providing education, direction, and support to health professionals and the wider community. Our Values - Ā Mātou Uaratanga Compassion We show compassion to every person affected by ME/CFS, including family and whānau.  Respect We foster partnerships based on mutual trust, treat every person with dignity and always maintain confidentiality.  Equity We are committed to removing health inequities and barriers.  Patient-centred We support our community with services and information based on evidence and experience, assisting each individual to design supports & management protocols that work for them.   Collaboration We work together constructively and creatively recognising each other's strengths, and those of other organisations, to get the best outcomes for our community.  We acknowledge Te Tiriti o Waitangi as a founding document in New Zealand and demonstrate a commitment and special obligation to its principles. 

Library Our library of books and limited equipment is available to members free of charge. The books in our library have been selected or donated by past and current members and supporters of MECFS Canterbury. Please note that it is not our role to endorse all books or all content of each book. CLICK TO VIEW ONLINE CATALOGUE The library includes books on evidence-based management of ME/CFS and other approaches, books about coping with long term chronic illness, and fiction related to ME/CFS as well. You can visit the library in person, but most people request that we post items out to them. We can provide you with a post paid courier bag for returning the books, and when you are ready to return the items, we can arrange for NZ Post to pick up from your home. Our Recommendations For those new to ME/CFS we recommend books by Dr Rosamund Vallings, Dr Charles Shepherd, and Dr David Bell. In particular: 'Chronic Fatigue Syndrome M.E. - Symptoms Diagnosis Management' by Dr Rosamund Vallings CLICK TO VIEW IN CATALOGUE For in-depth clinical guidance, we recommend: 'ME/CFS/PVFS An explanation of the Key Clinical Issues' by Dr Charles Shephard and updated regularly by the ME Association UK CLICK TO VIEW IN CATALOGUE Please seek medical advice: Any suggestions or advice given in any of the books in our library, should not replace medical advice, and we do not accept any responsibility for any treatment undertaken. Please discuss with your GP or health care team any changes to your treatment regime before implementing them, including the severity of your illness and any other health issues. We are all different, and unfortunately, what works for one person may not work for another. It is best to be careful. Can't find the book you want to read? Let us know if you would like us to get a book in, and we will do our best to purchase it for the library. First Name Last Name Email Message Thanks for your query! Send

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

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

Subscribe to our Newsletter Sign up to become a member to receive our bi-monthly newsletter. The newsletter includes information about managing and living with ME/CFS, latest research, our activities, plus more. BECOME A MEMBER Latest News 28 Oct 2021 NICE releases new guidance for ME/CFS 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. Read More 24 Oct 2021 Article in The Spinoff discussing support needed for people with long Covid Tom Harris, a member of MECFS Canterbury, writes for The Spinoff and asks ‘If you get long Covid, who’s going to help?’ Read More 4 Sept 2021 Mayo Clinic releases new consensus clinical guidance for ME/CFS The Mayo Clinic Proceedings publication has recently published a consensus recommendation article for ME/CFS written by the ME/CFS Clinician Coalition. It is exciting that another leading health care publication is sharing up-to-date evidence based information about ME/CFS. Read More 25 Jun 2021 New guidance from CDHB for physiotherapists We are delighted to announce that physiotherapists who have access to the Allied Healthways website provided by the CDHB now have appropriate advice available in the PhysioFITT guidance for ME/CFS. Read More 22 Dec 2020 New guidance for ME/CFS from CDHB for allied health professionals The Allied Healthways website provides allied health professionals with guidance for a range of health conditions and concerns. The website now includes up to date information about ME/CFS. Read More 10 Sept 2020 New public guidance from CDHB on ME/CFS Announcing updated information about Myalgic Encephalomyelitis /Chronic Fatigue Syndrome on the Healthinfo site for people living in Canterbury. This provides clear, reputable guidance from the CDHB about ME/CFS that will raise understanding and awareness. Read More 11 May 2020 ‘Years in Lockdown’ video for International ME Awareness Day, 12th May 2020 Many people living with ME/CFS live in permanent lockdown. When you move out of lockdown - and get back into a fulfilling life with a variety of choices and activities - we ask you to remember those that will stay in lockdown because they have ME/CFS. Read More 6 Dec 2019 New Guidance on ME/CFS for Canterbury GPs Canterbury District Health Board's diagnostic and management information for ME/CFS has now been updated with input from MECFS Canterbury. This provides GPs in the region with evidence-based guidance and best practice. Read More 6 Dec 2019 Christchurch chronic fatigue sufferer told it was all in her head Gillian Watson, an MECFS Canterbury member, recently sat down with Oliver Lewis from stuff.co.nz and detailed her experiences with the ME/CFS. Being told to keep pushing was detrimental. Read More