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We invite you to watch Nurse Wendy Dragt’s talk about Orthostatic Intolerance (OI) and its Management – now available on our youtube channel < Back Orthostatic Intolerance and its management Presentation 1 Sept 2025 We invite you to watch Nurse Wendy Dragt’s talk about Orthostatic Intolerance (OI) and its Management – now available on our youtube channel We invite you to watch Nurse Wendy Dragt’s talk about Orthostatic Intolerance (OI) and its Management – now available on our youtube channel https://youtu.be/HSj8zcK7XK0 OI is a common symptom in # MECFS, Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. There are various types including #POTS (Postural Orthostatic Tachycardia Syndrome), #NMH (Neurally Mediated Hypotension) and low Orthostatic Intolerance. This presentation covers: ✦ Definition and background ✦ Patho physiology – what’s going on? ✦ Diagnosis ✦ Management ✦ Resources This recording provides useful information for people with ME/CFS, POTS, or NMH, their health team, and whānau. At 62 minutes long, you may need to take some breaks and watch it over a couple of sessions. Expand the description for the video on YouTube to access the pdf of the slide deck and a timestamped list of the slides, plus more. ___________________________ DISCLAIMER: Please note that ME/CFS Canterbury / West Coast does not recommend any treatments for any individual. Any advice, either explicit or implied, is not intended to replace qualified medical advice. We do not accept any responsibility for any treatment undertaken by readers of any articles or other content, or for any error or omission in connection with any content published on our social media. ME/CFS Canterbury / West Coast is not responsible for the accuracy of content that we link to. The inclusion of such links does not imply endorsement by ME/CFS Canterbury / West Coast. Previous Next

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.

We are looking for another part time Work and Income Advocate to join our team. < Back Work and Income Advocate Vacancy 22 Apr 2026 We are looking for another part time Work and Income Advocate to join our team. We are looking for another part time Work and Income Advocate to join our team. Could you help us to make a difference for people with ME/CFS and long COVID? Or do you know someone who might? ____________________________ About #MECFS : ME/CFS is a serious long-term illness. People living with ME/CFS experience a fluctuating severity of symptoms and are severely impacted in the activities of daily living. Appropriate clinical support and guidance for self-management can improve symptoms and quality of life. ____________________________ About Us: ME/CFS Canterbury / West Coast Charitable Trust is a growing community health organisation and charity. We focus on improving the lives of people living with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome and #longCOVID and their whānau, by providing information, validation, clinical support, connection, practical support and advocacy. We also provide educational opportunities and guidance about ME/CFS for health professionals. We deliver our services in Canterbury and the West Coast of New Zealand. Visit our website www.mecfscanterbury.nz to find out more. ____________________________ For details about the vacancy: ✦ Ad on TradeMe - https://www.trademe.co.nz/a/jobs/healthcare/community-social-services/canterbury/christchurch-city/part-time/listing/5895976604 ✦ Closing Date: 8am Wednesday 6th May 2026 Previous Next

Volunteer Outreach Services We have a growing team of wonderful volunteers in our Outreach Service who provide one-off or regular practical support for people affected by ME/CFS. Our kind volunteers help with tasks such as housework, dog-walking, gardening, friendly company, and technical support. This support can help clients to stabilise symptoms, manage obligations and domestic activities, and reduce isolation. We won’t always have a volunteer to match with you in your area, but if you let us know what your needs are, we can certainly try to find someone. All our volunteers have a clean result from a Police Check, are given information about ME/CFS, and sign confidentiality and other volunteer agreements. A quick note to set expectations of our Outreach Service... T here are some factors affecting the capacity of this service currently: It is coordinated by a part time volunteer, and sometimes the coordinator position itself is vacant. It takes time to onboard volunteers and then to match them with clients that need the help offered in the suburb needed. Volunteers do not always stay for long, as they may move onto employment or further study. However, please do put your name on the list if you are interested in this support. We can't guarantee we will find a volunteer for you, but it makes it possible if we know what your needs are. To access this service: To refer yourself to the Volunteer Outreach Service, 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.

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

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

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

How We Help We are focused on providing services, resources and connections to improve the lives of people affected by ME/CFS and Long Covid throughout the Canterbury and West Coast regions. Our core team of six part time employees and several volunteers bring passion to this work, but unfortunately our capacity does not fully match the needs of our community, and there are waitlists and other limitations for some of our services. We apologise for this and assure you that we are exploring opportunities to increase the funding for our services. We invite you to explore the services that are available from us below. Registered Nurse Service Our Registered Nurse Service is delivered through home visits, zoom consultations, and other interactions to people of all ages. Our nurses help members with assessment for diagnosis, management of symptoms, advocacy, and more. READ MORE Group Meetings and 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. Non-m embers and whanau are also welcome to attend. READ MORE Online Community We invite people affected by ME/CFS or Long COVID throughout the South Island to join our peer support group on Facebook to share information and experiences and to support each other. You don't need to be a registered member with us to join this group. READ MORE Volunteer Outreach Services We have a growing team of wonderful volunteers who help our members with tasks such as housework, dog-walking, gardening, friendly company, and technical support. READ MORE Work and Income Advocacy Our advocates support our members to explore what financial support may be available from Work and Income. READ MORE Newsletters We release bimonthly newsletters containing updates on the activities of the organisation, information about managing and living with ME/CFS, latest research, plus more. READ MORE Library Our library of books and equipment is available to members free of charge. The catalogue can be browsed online and we can post books out to you and arrange for their return to us. READ MORE Intervention Fund We operate a small Intervention Support Fund to cover semi-urgent costs that members are unable to manage. READ MORE Advocacy We are involved with advocacy at an organisational level, both regionally and nationally. READ MORE

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. < 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

It is incredibly challenging living with a disabling chronic illness like ME/CFS as it significantly reduces our options and the quality of our life. It is natural that we would grieve the losses and find it difficult to cope with at times, especially if we are very unwell and not receiving much support. There are services and strategies that will help you to cope. Mental Wellbeing It is incredibly challenging living with a disabling chronic illness like ME/CFS as it significantly reduces our options and the quality of our life. It is natural that we would grieve the losses and find it difficult to cope with at times, especially if we are very unwell and not receiving much support. Find and develop strategies that help you cope: Schedule in activities that you enjoy or that help you feel connected to others. Stress will worsen any illness, and ME/CFS is no exception, so look for ways to minimise stressors. Allocate time for friendships with people who understand and care. Explore practices like mindfulness and self-compassion (see Strategies section below). Talk to your doctor about accessing counselling or other mental health services (see section below). Consider coming along to our in-person and online meetings , or joining our Facebook support group , to connect you with people who understand about life with chronic illness. We offer some suggestions for accessing counselling and developing strategies below. There are a range of mental health helplines and support services available in New Zealand and many of them are free. Give yourself permission to use them if you need to. The Mental Health Foundation of NZ provides a list of support options here . Need to talk? Free call or text 1737 any time for support from a trained counsellor. The Health Info website provides information about 'Getting help for a mental health issue' from Health NZ. This describes some of the mental health supports available in the South Island, including those available through your GP. To see a counsellor privately, you may be eligible for financial support to cover the fees from Work and Income, even if you are already receiving a Disability Allowance (see section below). Accessing mental wellbeing support Questions to ask a prospective therapist It is appropriate to ask a prospective service or therapist some questions before you start working with them, or during the first session. Consider asking: Ask what they understand about ME/CFS, or the chronic illnesses you have, to confirm that it matches current international guidance e.g. are they aware of the ME/CFS guidance on Health Info , from NICE (UK) or CDC (USA)? Are they familiar with the impacts of living with an invisible chronic illness which changes daily life and has no approved treatment? Describe what you are wanting support with and ask them to confirm they have relevant experience and interest in supporting you. You may have identified that you want support with issues, such as stress and uncertainty, adjustment, stigma, hopelessness, sleep problems, relationship challenges, grief and loss, identity, parenting, anxiety, and other mental health problems. Confirm what the funding arrangements are for the therapy. Confirm that the therapy can be offered in a format that meets the severity of your illness e.g. telehealth, phone, their office, your home, text. Wellbeing services through your medical centre Many General Practice clinics now have Health Improvement Practitioners (HIPs), Health Coaches and Support Workers through the Access and Choice programme . These team members are available to deliver a wide range of mental wellbeing support and tools, without long waits and often on the same day, and the services are free. Health Improvement Practitioners (HIPs) are experienced mental health clinicians who work with people of all ages and their whānau. They may have a degree in psychology, psychotherapy, mental health nursing, social work, occupational therapy or be a DAPAANZ registered counsellor. HIPs help people with any issues impacting on their health and wellbeing. Sessions are brief (15-30 minutes), normally in-person, and focus on what is important to you, today. At your first session you will get some strategies and a plan. There are no limits to how often you can see the HIP. Talk to your GP or ring your medical centre to find out the best way to get seen by a HIP who has an understanding of ME/CFS and life with chronic illness. View the Map of practices in Canterbury that have a HIP available. Other Brief Intervention Talking Therapy (BITT) options are also usually available. Ask your medical centre to refer you for free short-term support with your mental wellbeing. BITT therapists are registered mental health professionals and telehealth options may be available. Counselling by telehealth with Pūawaitanga If you are wanting to try some talk therapy, you may want to consider the short-term counselling offered via telehealth by Pūawaitanga. It is free for people over 18 who are on a Work & Income benefit or who hold a Community Services Card. If you don’t meet the criteria for free services, you can also pay to access the service. The sessions are offered through phone or video call between 9am-9pm, 7 days a week. There is no waitlist and first appointment is usually within five days. The number of sessions is flexible, depending on need. Pūawaitanga have confirmed they have counsellors who have experience offering support for long term health concerns, and that this can be requested in the referral. Self-refer through their website www.puawaitanga.nz or call 0800 782 999. Ask to be assigned with one of their trained professionals who is familiar with the impacts and grief of chronic illness. Counselling for under 25s with Gumboot Friday Gumboot Friday provides two free counselling sessions for anyone aged 25 and under who needs the support of a qualified practitioner, including counsellors, psychologists, psychotherapists, and art therapists. You can search their directory and select up to three counsellors who you’d be willing to talk to and then send them a message. Sessions can be face to face, online or by phone. “Remember, there’s no shame in asking for help – it’s just a conversation.” Counselling from Anxiety NZ Anxiety New Zealand offers a range of accessible mental health services including a low-cost online counselling service for young people (11+) and adults who are navigating mild to moderate mental health challenges. This counselling offers a safe and supportive space to explore personal challenges, build resilience, and achieve positive goals and emotional wellbeing. It's there for you if you are experiencing anxiety, grief, life transitions, or stress. (It's not limited to only supporting people experiencing anxiety.) If you are on a low-income you may be able to access the counselling for free. Appointments are available Monday to Saturday, including after hours. Are you feeling stressed or anxious now? Anxiety NZ also offers a free 24/7 helpline ... "Here for you, 24 hours a day, 7 days a week. Give us a call" on 0800 ANXIETY (0800 269 438). Aoake te Rā Aoake te Rā , also known as the Bereaved by Suicide Service, is a free service that gives 6 to 10 free sessions to support individuals and whānau to navigate life after suicide loss, whether recent or a long time ago. If you have lost someone to suicide, it may be impacting your physical health as well. Experienced therapists can support you to honour the grief and to explore finding a place for it. Private Counselling and Psychologists You can find a counsellor through the directory from the New Zealand Association of Counsellors (NZAC ). You can search for counsellors in your region and what they specialise in e.g. chronic illness, chronic fatigue syndrome. Most counsellors can offer telehealth sessions. You may have to pay part or all the cost. Health Psychologists seek to help people cope with the emotional and psychological impacts of adjusting to living with chronic physical health problems, and to foster hope for the future. Search the NZ Psychological Society directory or use a search engine to find the websites of psychologists. Employee Assistance Programmes (EAP) Some employers offer employee assistance programmes (EAP) to their employees and this may also be available to family members. An EAP is a confidential service that your employer pays for to give employees access to qualified, registered and experienced professionals. An EAP therapist can help you talk through issues affecting your wellbeing. Talk to your manager or human resources representative about whether your employer offers an EAP. Funding from Work and Income You may be eligible to apply to have the costs of ongoing mental health support covered by the Disability Allowance (DA) or the Temporary Additional Support (TAS) allowance from Work and Income. You don’t have to be on a benefit to qualify for the DA, but you and your partner cannot earn more than set income limits. The TAS has both income and asset tests and needs to be applied for every 3 months. Further Information About Services The Family Services Directory from MSD also lists a range of mental health services. Additional resources from the Mental Health Foundation of NZ include: Support for Myself is a list of resources including strategies for recovery. Accessing Mental Health Services covers finding a GP, community mental health services, how to find a therapist or professional, and finding a therapist privately, and community support groups. Developing strategies for mental wellbeing Reasons for prioritising self-care strategies Looking after our mental wellbeing often helps our symptoms to stablise and our health to improve. Low mood can sometimes be part of post-exertional malaise (PEM), so if the PEM episodes can be reduced, your mood may improve as your symptoms become more stable. Use our guidance for Activity Management to pace as well as possible given your circumstances. With ME/CFS and Long Covid, our autonomic nervous system might become dysfunctional, or dysregulated. This autonomic system includes our sympathetic nervous system (fight or flight) and parasympathetic nervous system (calm/rest/digest). Your body may have trouble moving into the rest state, which can make your body feel that it is in danger or anxious. Along with our tips at the top of this page, it can be really helpful using mindfulness, breathing, gentle stretches or relaxation techniques during each day to calm down your nervous system. Self-directed Online Courses and Resources There are many courses and online resources that you can explore at your own pace. A selection of courses... Free courses and resources for New Zealanders covering anxiety, depression, and more www.justathought.co.nz/courses Free and paid content from Breathworks, including mindfulness for chronic illness www.breathworks-mindfulness.org.uk/listing/category/self-guided-courses Other resources... The NZ Health App library from Healthify , highlights apps for mental health and wellbeing, mindfulness, and more. Some apps are free, others have a cost. Search our library catalogue for books that might support your mental wellbeing. We can post books out to you at not cost. Self-Compassion Self-compassion is a vital practice that can help us to reduce stress and increase our ability to enjoy what we can in difficult circumstances. Self-compassion is treating ourselves with the same care, kindness and concern that we would give a friend, when they are in pain or difficulty. It involves exploring soothing touch and soft vocalisation which release oxytocin and endorphins and help to reduce cortisol and relieve pain. Self-compassion also involves setting appropriate boundaries to protect our property, our time, or our emotional, mental and physical well-being. Kate Brandram-Adams, from Mindfulness North Canterbury, presented a workshop for us on this topic. Watch the recording here . For more information: Dr Kristin Neff website: www.self-compassion.org/self-compassion-practices Mindfulness Mindfulness is a practice that can help us to cope with the impacts of living with a chronic illness such as ME/CFS. It may enable us to notice changes to our symptoms sooner and give us an opportunity to bring a more compassionate response, rather than pushing through. It can also be useful for taking our attention away from our symptoms and may help to calm our autonomic nervous system (ANS). Di Robertson, a mindfulness mentor, has previously led a presentation and practice session for us. Watch this on YouTube. For more information: Mindfulness on Healthify healthify.nz/hauora-wellbeing/m/mindfulness Mindfulness Apps: www.headspace.com www.insighttimer.com Mindfulness Training App: www.themindfulnessapp.com Courses: MBSR (Mindfulness Based Stress Reduction ) Finding Resilience Elizabeth Hamilton, a social worker and counsellor, has talked to us about finding resilience when debilitating illness brings many changes to our lives, along with loss, and grief. Being aware of our circle of control and approaches for living through and with loss and grief can make a difference. We invite you to watch the recording of Elizabeth's session on YouTube. Te Whare Tapa Whā Te Whare Tapa Whā is a wellbeing model developed by leading Māori health advocate Sir Mason Durie in 1984. The model describes health and wellbeing as a wharenui/meeting house with four walls. These walls represent taha wairua/spiritual wellbeing, taha hinengaro/mental and emotional wellbeing, taha tinana/physical wellbeing and taha whānau/family and social wellbeing. Our connection with the whenua/land forms the foundation. When all these areas are in balance, we thrive. When one or more of these is out of balance our wellbeing is impacted. Occupational Therapist Sarah Phipps led a presentation and workshop for us and highlighted some specific strategies for people with ME/CFS, including finding ways to live with loss. You can watch the presentation on our YouTube channel.

Loungewear and accessories for the ME/CFS community. Made to be lived in, rested in, and seen in. Wear a hoodie or tshirt to tell some of your story. Make a statement while supporting our charity. Crash Wear We're so excited to launch our official ME/CFS Canterbury merch range! Crash Wear is a collection designed with the ME/CFS community at heart - whether you live with it, care for someone who does, or advocate for awareness. From soft, sensory-friendly loungewear to bold minimalist accessories, every piece makes a quiet but powerful statement. Whether you're pacing in a hoodie, resting with a cup of tea, or advocating from bed with a statement pillowcase, each item helps support our local work for people with ME/CFS and Long Covid right here in Canterbury and the West Coast. We receive a small amount from every sale, and 100% of that goes directly to our advocacy, support, and awareness efforts. So, when you buy something, you're helping to make a real difference. Crash Wear Made to be lived in, rested in, and seen in. Wear your story. Support your community. Visit our Crash Wear Store