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

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. 

Contact Form: First Name Last Name Email Phone Topics Tell us what you need help with SEND Thanks for query. We’ll get back to you shortly. Our Contact Details: For any enquiries, please contact us via the form above, or by email, text, or phone. Email: info@mecfscanterbury.nz Text: 020 4027 0176 Phone: 03 365 5887 Postal address: PO Box 10090, Phillipstown, Christchurch 8145 Our Office: Please ring to make a time to visit. The office is not always open as we are a part-time team, and often have appointments outside the office. Our office is located at: 71 Orbell St, Sydenham, Christchurch 8023 There is onsite carparking. Use park #7 or #8, or one of the visitor carparks. Christchurch Venue: Our monthly Christchurch in-person meetings are held at the lovely Mary Potter Community Centre. Address: 442 Durham St North, St Albans, Christchurch 8014 This venue is just north of Bealey Avenue and has 30 onsite carparks. It also has comfortable lounge chairs and padded seats, and a beautiful garden. To get familiar with the centre before you arrive, you may like to watch the centre’s walkthrough video. Rangiora Venue: Our Rangiora in-person meetings are currently held at The Skurr Centre. Address: 156 Ashley Street, Rangiora Showgrounds, Rangiora This venue has onsite carparks. Our Meeting Venues: Other Venues: We use other venues from time to time. Please check the event listing to confirm venue location. Join us: To receive support and /or information about ME/CFS from us on a regular basis, please sign up as a member (it is free). Please complete our membership form, either: Join online or Print PDF and post

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 group is a private Facebook group that provides a local online community for people living with ME/CFS. It is a safe place to connect and share experiences and information. You are welcome to join us. Click on the Facebook icon to join us! 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

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

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.

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

Help a friend with ME/CFS If you know someone who lives with ME/CFS, your help and support can make an important difference to their lives. Ask them what would make things easier for them, and what support they would like. Perhaps prepare a meal, provide quiet company, help with housework or maintenance, or pay a bill. If you invite them to an event, consider how to reduce the energy required of them, provide a quiet space to rest, and be aware that they may need to cancel on the day if they are too unwell. Believe them. Learn about their experience and the illness. Remember to manage the support you give around your own needs. Possible next steps: Support your friend to join us so that they can receive our services. FILL OUT OUR MEMBERSHIP FORM Have any questions? Please reach out to us. CONTACT US Guidance for hosting and gifts:

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

< Back New guidance from CDHB for physiotherapists 25 Jun 2021 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. We are grateful to the clinical editors from the Canterbury District Health Board who have worked with us recently to provide up-to-date guidance about ME/CFS for physiotherapists working with the PhysioFITT programme. This new guidance is available on the CDHB's Allied Healthways online platform, and will help health professionals to be aware of current understanding of this debilitating illness, and the need to move away from prior advice that is no longer recommended. Under the PhysioFITT program, physiotherapists assess the clinical context of the patient and deliver a tailored assessment and activity plan appropriate to their health condition(s). Key points made for ME/CFS clients: Avoid exercise tests that may trigger post-exertional malaise (PEM). Check for Orthostatic Intolerance. Graded Exercise Therapy (GET) is not recommended for ME/CFS. Exercise should be used for physical maintenance (core strength, bone density and enjoyment) and be at a level to avoid post-exertional malaise (PEM). If PEM is experienced frequently, consider reducing rather than increasing activity in order to improve overall wellbeing. It may be more helpful to focus on daily activities than formal exercise. Make #movementforlife safe for #MyalgicEncephalomyelitis #ChronicFatigueSyndrome Previous Next

< Back Article in The Spinoff discussing support needed for people with long Covid 24 Oct 2021 Tom Harris, a member of MECFS Canterbury, writes for The Spinoff and asks ‘If you get long Covid, who’s going to help?’ Tom Harris, a member of MECFS Canterbury, writes for The Spinoff and asks who will provide funding and care for people with long Covid. Tom shares his experience at being a longhauler – he has ME/CFS, a multi-system neuroimmune disease that is similar to long Covid. He notes that he recently used the MECFS Canterbury nurse service and says it was "the first time in eight years of post-viral illness that I spoke with a medical professional fluent in its [ME/CFS] management." Tom continues "While I have had several very good GPs, the quirks of these illnesses benefit immensely from familiarity and expertise." He suggests that the support he has found may well be the best model for people with long Covid. But that support needs to be funded." Read Tom's article on The Spinoff: https://thespinoff.co.nz/society/25-10-2022/if-you-get-long-covid-whos-going-to-help Previous Next