Search Results

Building a trusting relationship with your doctor is an important part of any illness management plan. This is especially the case when you have a complex and long-term illness like Myalgic Encephalomyelitis /Chronic Fatigue Syndrome and may also have other comorbidities. Working with your Doctor Building a trusting relationship with your doctor is an important part of any illness management plan. This is especially the case when you have a complex and long-term illness like Myalgic Encephalomyelitis /Chronic Fatigue Syndrome and may also have other comorbidities. ME/CFS can be a challenging illness for doctors. They may not have received any training in ME/CFS, nor be aware of the current clinical guidance. Also, ME/CFS can present differently in each person and there are limited treatments available. This situation can lead to frustration for both the doctor and the patient. An informed GP with a good understanding of your situation, may be able to refer you to other health services and can provide medical evidence for a range of financial supports from Work and Income and information for employers. We have put together some tips that may help you to partner with your doctor, to share the lived experience, and to ensure that the doctor is aware of current and emerging evidence-informed practice. Open our 'Working with your Doctor' handout The Healthify website also has advice for making the most of health care provider visits in New Zealand www.healthify.nz/hauora-wellbeing/h/healthcare-provider-visits . Clinical Advice for GPs about ME/CFS 'HealthPathways' is an online system from Health NZ that GPs log into to view best-practice clinical advice for assessing and managing a wide range of health conditions and concerns. Ask your health professionals if they have read the ME/CFS topic on HealthPathways recently, as it includes current best-practice clinical advice, based on the IOM 2015 diagnostic criteria and management guidelines from NICE , CDC , Mayo Clinic and ME/CFS expert clinicians. The shorter, public version of the advice can be viewed at www.info.health.nz/health-topics/conditions-treatments/brain-and-nerves/chronic-fatigue-syndrome . To encourage your health team to check it out, we have prepared a letter about the ME/CFS HealthPathway . Print this out, or send them the link, or email our office if you would like a copy of the letter posted out to you to take to your next GP appointment. Your doctor may also be interested to view the excellent 96 page 'Clinical Care Guide: Managing ME/CFS, Long COVID, & IACCs' from Bateman Horne Centre , USA, who are leading international ME/CFS clinicians. Also see our links for health providers . Forms to help you plan for an appointment A planning sheet allows you to write down what you want to share and how you want to say it, and also, to take notes about what is said in the appointment. We suggest using one of the following templates (these are not ME/CFS specific) to get your thoughts and priorities organised before your appointment: The single page Preparing Information for your Doctor Appointment template from Emerge Australia, a ME/CFS charity. This form provides space for you to write your goals and questions for this appointment, some notes about follow-up from your previous appointment, and more. The Appointment Day template set (7 editable pdf templates) is a non-ME/CFS specific set of single-page forms available for free from BeforeMyVisit.com, an AI health platform based in Ireland. Take a look and see if you would find any of these useful. They also have an AI tool that you might want to try out. The Health Quality & Safety Commission, NZ, also has a two-page Plan for your next Health Care Visit sheet which is available in different formats and languages . Forms for making your illness more visible There are a variety of forms and tools available to make the symptoms and impact of living with chronic illness more visible to your health team. Think about what you want to share… Is it your reduced capacity to do things, or what your symptoms are, or both? FUNCAP The Functional Capacity Questionnaire was developed for people who experience post-exertional malaise. It comes in two question lengths (55 and 27) to document your functional capacity, support needs, and loss of independence for a range of activities... personal hygiene and basic functions, walking and moving around, being upright, activities in the home, communication, activities outside your home, reactions to light and sound, and concentration. There is an online version of FUNCAP55 which generates a pdf of your results. For iPhone users, there is a FUNCAP27 app. For others, print the FUNCAP27 pdf and calculate your own results. A research article was published in 2024 to document why and how the questionnaire was developed. Long COVID For people with Long COVID, the two-page Post COVID Symptom Map, developed by Physiotherapy New Zealand for Ministry of Health, highlights symptom severity and functional disability. Bateman Horne Centre Forms The single-page editable Good Day Bad Day Questionnaire from Bateman Horne Centre has ten questions for you to answer to highlight your range of function on baseline/good days and PEM/crashed/bad days and your hours of upright activity (HUA). BHC also has a Health Assessment worksheet to note symptom scores, hours of upright activity, pain areas and appointment priorities. Both forms have been developed for ME/CFS and related chronic illness. Emerge Australia Forms The single-page Symptom Severity and Severity Hierarchy Profile from Emerge Australia allows you to identify your symptoms, their severity and your priority in having them addressed. They also have a Sleep and Pain Profile form. Both forms have been developed for ME/CFS and related chronic illness. Basic ME/CFS Diary Our Activity and Symptom Diary allows you to monitor and log your activity, biometrics, and symptoms over 7 days. This may help you and your health team to identify what triggers post-exertional malaise for you and what your activity baseline and pacing needs are. Generic Symptom Severity Scale Form The two-page editable Symptom Severity Scale from Care Patron is not ME/CFS specific. It includes space to rate and describe your symptoms and their impact. Finding a new GP There are services around the region that can assist you with finding a local General Practitioner and other services. Ask them to recommend a GP who is taking new patients and supports and understands your health conditions: Tautoko Hauora in Canterbury Awawhenua Whanau Services in South Canterbury. West Coast Health for the West Coast. The national www.healthpoint.co.nz website also has a search function to find local and online services. Pegasus Health in Canterbury also provides useful advice about finding Your Best Care | Choose your best health care option . It can be useful talking to other people living with the same health conditions about the health professionals that they have found helpful. My Health Passport My Health Passport is a booklet where you can write down information about how you want people to communicate with you and support you when you receive a health or disability service, including when you visit a medical centre or the hospital. It is not a tool to help doctors diagnose or monitor patients, nor a substitute for a patient’s medical records. But it can be a useful way to get key information across, especially at a time when you may not be cognitively present to communicate well. We have some A5 hard copies which we can provide to members. Please email us to post out to you, or you can pick up at a group meeting. Alternatively, you can download from the Health and Disability Commissioner website. They even have editable pdf versions, which you could edit and then print, or keep on your phone.

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 We plan to share key updates about ME/CFS and our organisation here. If you remember seeing a notice about new guidance or initiative in our newsletter or social media and want to revisit the details, it will be worth checking the updates listed below. 19 Jan 2026 ME/CFS a Brief Introduction A brief introduction to Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Read More 18 Jan 2026 Associated New Zealand ME Society (ANZMES) Survey 2026 Share your voice Read More 19 Nov 2025 Give-a-little Day 2nd December 2025 Radical Rest Challenge - Nominate a friend or two (or yourself) Read More 11 Nov 2025 ME CFS Canterbury Registered Nurses attend RID2025 The 4th International Conference on ME/CFS, Long Covid and Gulf War Illness Read More 31 Oct 2025 It’s our 40th Ruby Anniversary! Thank you to the individuals and funders who have supported our journey since we became a charity in 1985. Read More 8 Oct 2025 October is Dysautonomia Awareness Month Dysautonomia often appears invisible, but it has a significant impact on daily life. Read More 5 Oct 2025 Mental Health Awareness Week 5-12 October 2025 When living with chronic illness it is natural to grieve the losses and find it difficult to cope with at times. Read More 3 Oct 2025 New West Coast Peer Support Group Join our new facebook group for people affected my ME/CFS and Long Covid living on the West Coast Read More 22 Sept 2025 New Health Information page for ME/CFS from Health NZ Health NZ has acknowledged that ME/CFS is a debilitating, long-term illness in the new Health Conditions section on their website. Read More 1 Sept 2025 Orthostatic Intolerance and its management Presentation We invite you to watch Nurse Wendy Dragt’s talk about Orthostatic Intolerance (OI) and its Management – now available on our youtube channel Read More 1 Aug 2025 Join our quiet act of solidarity for people with severe ME/CFS on 8th August 8pm #LightsLowForME creates a visible, low effort way for allies to show solidarity while honouring the often-invisible suffering of people with severe ME Read More 18 Jul 2025 Launch of our Crash Wear 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. Wear your story. Support your community. Read More 12 May 2025 New clinical guidance for ME/CFS on HealthPathways Announcing updated guidance for clinicians in Canterbury and West Coast from Health NZ. We encourage health professionals who have access to HealthPathways to become familiar with the extended guidance for diagnosis, treatment and management of this debilitating condition. Read More 8 May 2025 ME/CFS and its Management Presentation We invite you to watch Nurse Wendy Dragt’s talk about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and its Management – recording now available on our youtube channel. Read More 6 May 2025 BHC publishes Clinical Care Guide The Bateman Horne Centre based in Utah, USA, is one of the leading ME/CFS clinical education organisations in the world. In May they released an excellent 96 page ‘Clinical Care Guide: Managing ME/CFS, Long COVID...' Read More 4 Apr 2025 Ehlers-Danlos Syndrome (EDS) and Hypermobility Disorders presentation 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. Read More 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

Online Community We invite people affected by ME/CFS and Long COVID throughout the South Island to join our peer support group on Facebook to share information and experiences, and to support each other. We welcome both formal members of MECFS Canterbury and non-members to join the community there. You will be asked several questions prior to joining, including your commitment to adhering to our Rules for the Facebook Group – we want to provide a safe place for everyone in our regional ME/CFS community. We also host a Facebook group for those who live on the West Coast, to help facilitate local connections, information sharing, and social catchups. JOIN THE SOUTH ISLAND ONLINE COMMUNITY JOIN THE WEST COAST ONLINE COMMUNITY

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

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 or gather to do an activity together. Events Calendar You may wish to follow us on Facebook , or join us as a Member , to be notified of our upcoming events. Group Meetings Our group meetings may have an educational, support, or social focus for people affected by ME/CFS and long COVID. These group meetings are a good opportunity to share information and connect with other people who understand life with a chronic illness. Non-members are welcome to attend. Meetings and social catchups are currently held in Christchurch, Rangiora, Timaru, Westport, Greymouth, Hokitika, and also, online. See the calendar above and the location details below for more information. Christchurch In-Person These are held on the last Wednesday of each month from 1pm to 3pm. A highlight for attendees is connecting afterwards from 2pm to 3pm with a cup of tea, and dairy and gluten free refreshments. We meet at the lovely Mary Potter Community Centre in St Albans. See Location Rangiora In-Person These are held on the third Wednesday of every second month from 1pm to 3pm (Jan, Mar, May, Jul, Sep, Nov). From 2pm to 3pm we have afternoon together, with dairy and gluten free options. We usually meet in The Skurr Centre, 156 Ashley Street, Rangiora Showgrounds, Rangiora. See Location Timaru In-Person These are held on the third Wednesday of every second month from 1pm to 3pm (Feb, Apr, Jun, Aug, Oct, Dec). From 2pm to 3pm we have afternoon together, with dairy and gluten free options. We usually meet in the Timaru Library, Community Room, 56 Sophia St, Timaru. See Location Online Meeting (Zoom) These are held on the second Wednesday of each month from 12 noon to 1pm. See the event calendar below for more details. These online meetings can be a great option for people who are unable to attend the in-person meetings, for various reasons such as being bed-bound, house-bound, or living outside of Christchurch. Register Online Hokitika In-Person These are planned for the first Tuesday of every third month from 10 am to 11.30am. Morning tea with dairy and gluten free options provided at 11 am. We usually meet in WestREAP, 72 Tudor Street, Hokitika See Location Online Craft (Zoom) These are held every Thursday at 11am to noon. Join any week, at any time. This is a friendly online social space to connect and chat while you make progress on a creative project. Register Online West Coast Catchups Social catchups in a café are sometimes self-organised by the community in Westport, Greymouth, and Hokitika. Find out the latest by joining the Facebook group for people with ME/CFS and long COVID in the West Coast. Join Group Education for Health Professionals We are able to facilitate and deliver education events for health professionals from time to time. Please get in touch if this is of interest. CONTACT US Event Resources Following each event, we share information and summaries in our newsletter, by email to our members, and also in our Facebook group. This ensures that people who were interested but could not attend the event, can get familiar with the information. If a recording of an educational presentations was made, we share this on our YouTube channel, along with any handouts. GO TO OUR YOUTUBE CHANNEL

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. < Back New public guidance from CDHB on ME/CFS 10 Sept 2020 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. Announced today! Updated information about Myalgic Encephalomyelitis /Chronic Fatigue Syndrome on the Healthinfo site for people living in Canterbury. MECFS Canterbury was proud to assist the CDHB with the update of this info. The content on HealthInfo provides clear, reputable information that people with ME/CFS can refer to for themselves, and also share with their friends, whānau and workplaces to raise awareness and understanding. It reflects the content on the HealthPathways platform and outlines the symptoms of ME/CFS, diagnosis method, self-care suggestions, treatments, and other supports available. To view, visit: www.healthinfo.org.nz/Chronic-fatigue-syndrome-CFS.htm Alternatively, view the Home page of the Healthinfo site at www.healthinfo.org.nz and use the search box at the top right to find the 'ME/CFS' topics. "HealthInfo is a health information website for the general public, funded by the Canterbury District Health Board. The information on HealthInfo is specific to Canterbury, New Zealand. It's written and approved by local ... healthcare professionals." "The website has a mix of health information, including factsheets on different topics and descriptions of local health services and support organisations. It also has links to recommended websites for further reading and research." "When you read information on HealthInfo, you can feel confident that this is the information your medical professional wants you to read." Previous Next

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. Wear your story. Support your community. < Back Launch of our Crash Wear merch range 18 Jul 2025 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. Wear your story. Support your community. 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 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. https://mecfscanterbury.digitees.co.nz/ 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.

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

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

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