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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. 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 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

The 4th International Conference on ME/CFS, Long Covid and Gulf War Illness < Back ME CFS Canterbury Registered Nurses attend RID2025 11 Nov 2025 The 4th International Conference on ME/CFS, Long Covid and Gulf War Illness Our nurses Amanda Wyatt and Wendy Dragt are currently attending #RID2025 – Hosted by Griffith University NCNED it is the 4th International Conference on ME/CFS, Long Covid and Gulf War Illness in Tweed Heads, Australia. The program features leading researchers like Professor Nancy Klimas speaking about immune and viral factors in ME/CFS, Professor Maureen Hanson on plasma proteomics, Professor Sonya Marshall-Gradisnik on TRPM3 ion channel dysfunction, and Professor Warren Tate talking about epigenetic mechanisms. Also presenting are Dr Natalie Eaton-Fitch on ME/CFS and Long Covid epidemiology, Dr Jessica Maya on inflammatory subgroups, and Professor Pete Smith on autonomic and immune links plus many more. It’s an inspiring opportunity for our nurses to hear the latest biomedical research and clinical insights, and to connect with others working to improve care for people with ME/CFS and Long Covid. #myalgicencephalomyelitis #mecfs #LongCOVID   Previous Next

About MECFS Canterbury Our Vision and Mission Our Organisation Meet our Team Why the Kuaka? Testimonials Our Partners Complaints & Feedback

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."

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

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. These group meetings are an important opportunity to share information and enable connections with other people who understand life with a chronic illness. Non-members are welcome to attend. In 2025, we hope to be holding meetings in Christchurch, Rangiora, Timaru, Westport, Greymouth, Hokitika and Reefton, and also, online. 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. 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 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 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

Join our new facebook group for people affected my ME/CFS and Long Covid living on the West Coast < Back New West Coast Peer Support Group 3 Oct 2025 Join our new facebook group for people affected my ME/CFS and Long Covid living on the West Coast In response to requests from our community on the West Coast, we have created a new Facebook group. We hope the new private group will help people living with ME/CFS and long COVID in the West Coast region to connect and support each other, as well as share information about local events and services. It will also allow us to keep you up to date with our meetings and other initiatives in your region and provides a space for people to self-organise local social catchups. Please request to join the group by visiting www.facebook.com/groups/mecfssupportgroupwestcoast Previous Next

Some people who have been infected with COVID-19 find that they have ongoing symptoms months afterwards. This chronic illness is sometimes referred to as Long COVID, Post-Acute COVID Syndrome (PACS), or Post-COVID-19 Syndrome. The symptoms of Long COVID may include: organ damage, the core symptoms of ME/CFS, (including fatigue, post-exertional malaise, brain fog) and other concerns. Long Covid and ME/CFS are both examples of a serious and debilitating condition that can follow any type of viral infections. There are some important differences that distinguish some people with Long COVID from those with ME/CFS. However, some people who have Long COVID can also be diagnosed with post-COVID ME/CFS. To explore this topic further in-depth we suggest the article published in Frontiers in Medicine in 2023, titled 'ME/CFS and Long COVID share similar symptoms and biological abnormalities: road map to the literature'. https://www.frontiersin.org/articles/10.3389/fmed.2023.1187163/full ME/CFS and Long COVID All services provided by MECFS Canterbury are available to people with Long Covid who are experiencing ME/CFS-like symptoms. Our Registered Nurse Service can partner with other health providers who are supporting people living with Long Covid. How we help PREVIOUS PAGE

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 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.healthinfo.org.nz/Chronic-fatigue-syndrome-CFS.htm . 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. 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.