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Share your voice < Back Associated New Zealand ME Society (ANZMES) Survey 2026 18 Jan 2026 Share your voice ANZMES Survey 2026. “ANZMES is changing. As we transition to a Charitable Trust and look toward the future, we want to ensure our goals align with the reality of what you expect. We are asking for your help to rank our priorities. We would greatly appreciate if you could please take 5–10 minutes to fill out this survey. Your input is important in shaping the future of ANZMES. Responses are due Monday 2nd February 2026 .” ___________________________ This survey includes 10 tick box questions, 2 short answer questions, and space for you to give other feedback. We encourage you to add your voice and provide descriptive feedback in Q.12 to help ANZMES reflect and formulate future planning as the national advisory for ME/CFS. e.g. ✦ What have you been grateful for? ✦ Did you know that ANZMES has developed material for GPs? ✦ How has your GP responded to any ANZMES material that you may have shared? ✦ Are there any improvements that you would like to see to their website? ✦ Have you had any interactions with ANZMES, and if so, how have these been? Find the survey online here Previous Next

Intervention Fund We operate a small semi-urgent Intervention Fund to support members in times of escalated need when they have no way to cover a critical cost themselves or from elsewhere. The support provided varies and may cover a voucher for food, one-off cleaning prior to a house inspection, an initial appointment with a counsellor, or the fee for a visit to GP or other health professional. We may not have funding to consider all requests, but please do enquire. We may be able to find some other way to cover the cost, if we cannot do so ourselves. To access this service: If you are already working with one of our Nurses or Advocates, please get in touch with them and explain what your needs are. They will explore options with you and then, if necessary, refer your situation to the Manager for consideration. Alternatively, members are invited to email the office directly to request support. CONTACT US

Testimonials Feedback received from a member in our 2023 Annual Survey “I just feel amazed that the organisation exists. I know that if I have an issue related to CFS that I cannot resolve myself, there is someone I can ask who will understand, and who may know how to get me the help. I also appreciate the kind and social nature of much of the communication; this is a health condition but it affects every domain of our lives, and so the efforts to connect and facilitate care and fun and connection even beyond the healthcare domain feel especially profound. You’d only set up your organisation that way if you understood what weird and indirect impacts this illness can have on your life, so to me the whole thing communicates understanding and an approach of 'you are welcome here'. What a beautiful thing to have when you are dealing with such a complex and overwhelming illness."

Getting Diagnosed At this stage, there are no specific diagnostic tests available that can be done in a clinical setting to confirm ME/CFS. However, healthcare professionals can make a diagnosis by using the diagnostic criteria, excluding other possible conditions, and ensuring that post-exertional malaise (PEM) is present. VIEW THE DIAGNOSTIC CRITERIA Your doctor is likely to refer to the clinical advice for ME/CFS on the Health Pathways website provided by Te Whatu Ora | Health New Zealand and may: Ask about you and your family’s health history. Ask about anything you have tried that makes the symptoms better or worse. Suggest that you keep a diary of symptoms and activity. Do a physical exam or take blood tests to rule out any illnesses that may cause similar symptoms. We have a lett e r that you can take to your GP to let them know about the new clinical guidelines for ME/CFS on the Health Pathways website. DOWNLOAD A LETTER FOR CANTERBURY GPS DOWNLOAD A LETTER FOR WEST COAST GPS Our Registered Nurse Service is available to support you when you are wondering if you have ME/CFS and are seeking a diagnosis. Our nurses work through the assessment process against the diagnostic criteria with you, and then, with your permission, can share the result with your GP. How we help For a comprehensive list of clinical primers and other resources for health professionals refer to: Link https://m.e.awareness.nz/resources-health-professionals/ PREVIOUS PAGE NEXT PAGE

Wendy Dragt, a nurse at MECFS Canterbury, recently presented an overview of Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD) for us. The talk covered definitions, diagnosis, management, plus more. < Back Ehlers-Danlos Syndrome (EDS) and Hypermobility Disorders presentation 4 Apr 2025 Wendy Dragt, a nurse at MECFS Canterbury, recently presented an overview of Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD) for us. The talk covered definitions, diagnosis, management, plus more. Wendy Dragt, a nurse at MECFS Canterbury, recently presented an overview of Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD) for us. The talk covered definitions, diagnosis, management, plus more. People with EDS or HSD have joints that have a greater range of motion than is expected or usual. EDS also has significant connective tissue abnormalities that affect skin, joints, muscles and blood vessels. Symptoms can include subluxation, dislocation, chronic pain and fatigue, Dysautonomia (POTS), gastrointestinal issues, Mast Cell Activation Disorder, and more. The recording is now available to watch on our YouTube Channel. https://youtu.be/6jEasfypq0k Expand the description on the video to access the slide deck in pdf format (with bonus slides) and a list of other useful references. Previous Next

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. < Back New guidance for ME/CFS from CDHB for allied health professionals 22 Dec 2020 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. 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, occupational therapists, social workers, and other allied health professionals. 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. Key points: Graded Exercise Therapy (GET) is not recommended for ME/CFS and may cause harm. Exercise can be used for physical maintenance (core strength, bone density and enjoyment) but needs to be at a level that avoids post-exertional malaise (PEM). Cognitive Behavioural Therapy (CBT) is no longer recommended as a treatment for ME/CFS as there is no evidence of specific benefit for ME/CFS. However, counselling may assist patients with adjustment to living with a debilitating chronic illness. Provide support for 'pacing' activities. The aim is to reduce physical and mental activity to a level that can be sustained without triggering post-exertional malaise (PEM). Make #movementforlife safe for #MyalgicEncephalomyelitis #ChronicFatigueSyndrome Previous Next

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

Privacy notice for MECFS Canterbury MECFS Canterbury complies with the Privacy Act and the Health Information Privacy Code . If you are not satisfied with our response to any privacy-related concern you raise with us, you can contact the Privacy Commissioner . Collection and Use of Personal Information We may ask you to provide and collect personal information from you, including the following information: Name, Age, Ethnicity Contact information Interactions with us Membership status Survey responses (not linked to personal information) Consent agreements for services Health details Clinical notes and support activity We collect your personal information in order to: Stay in touch and inform you about our activities. Provide statistical summarised information to our funding providers. Provide support and services to you, and to respond to feedback and queries. With your permission, we may share relevant health information with other healthcare professionals in a confidential manner, with the aim of improving the support you receive from your healthcare team. Providing some information is optional. If you choose not to provide contact details and information about your health, we may not be able to provide you with expected services. We keep your information safe by storing it securely (password-protected electronic storage and databases) and allowing only those authorised to see it. Paper based records are shredded when no longer needed. You have the right to ask for a copy of any personal information we hold about you, and to ask for it to be corrected if you think it is wrong. If you would like to ask for a copy of your information, or to have it corrected, please contact us at info@mecfscanterbury.nz , or 03-365-5887. Collection and Use of Website Visit Information Statistical Information We may collect statistical information about your visit to this website to help us improve it. This information is aggregated and doesn’t identify you personally. It includes: Your IP address The search terms you used The pages you visited on our site and the links you clicked on The date and time you visited the site The referring site (if any) from which you clicked through to this site Your operating system, for example Windows XP, Mac OS X The type of web browser you use, such as Edge, Chrome or Mozilla Firefox Other things like your screen resolution and the language setting of your browser. The statistical information referred to above can be viewed by site administrators and certain other staff. It may also be shared with government agencies. Google Analytics We use Google Analytics on our website to track your actions and help us optimise our site for conversions and usability. While we can see data gathered over a timeframe, we do not collect personally identifying information from any source as part of the terms of service of Google Analytics. A condition of our use of Google Analytics is that we make reasonable endeavours to bring to your attention the following statement: This website uses Google Analytics, a web analytics service provided by Google, Inc. (“Google”). Google Analytics uses “cookies”, which are text files placed on your computer, to help the website analyse how users use the site. The information generated by the cookie about your use of the website (including your IP address) will be transmitted to and stored by Google on servers in the United States. Google will use this information for the purpose of evaluating your use of the website, compiling reports on website activity for website operators and providing other services relating to website activity and internet usage. Google may also transfer this information to third parties where required to do so by law, or where such third parties process the information on Google’s behalf. Google will not associate your IP address with any other data held by Google. You may refuse the use of cookies by selecting the appropriate settings on your browser, however, please note that if you do this you may not be able to use the full functionality of this website. By using this website, you consent to the processing of data about you by Google in the manner and for the purposes set out above. We have implemented Google Analytics demographic and interest reporting based on the Google Display Network in order to provide information about users that is used to optimise our website. Any data collected by Google for the purposes of Google Analytics will be treated according to Google’s Privacy Policy. If you would like to opt-out of being tracked by Google Analytics, then you can do so using the Google Analytics Opt-out Browser Add-on. Cookies This site generates persistent session cookies (that is, they have an expiry date and are removed on that date) for the purpose of monitoring site usage. The cookies don’t collect personal information. You can disable them or clear them out of your web browser without affecting your ability to use the site.

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. < 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

Tom Harris, a member of MECFS Canterbury, writes for The Spinoff and asks ‘If you get long Covid, who’s going to help?’ < 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