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 25 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

Dysautonomia often appears invisible, but it has a significant impact on daily life. < Back October is Dysautonomia Awareness Month 9 Oct 2025 Dysautonomia often appears invisible, but it has a significant impact on daily life. October is Dysautonomia Awareness Month. Many people with ME/CFS also live with Dysautonomia.  Dysautonomia is an umbrella term for a number of conditions that affect the autonomic nervous system (ANS). The ANS controls functions our bodies should regulate automatically, such as heart rate, blood pressure, and digestion. Some of the Dysautonomia conditions are: Orthostatic Intolerance (OI), Postural Orthostatic Tachycardia Syndrome (POTS), Inappropriate Sinus Tachycardia (IST), Neurocardiogenic Syncope (NCS) / Vasovagal Syncope, Orthostatic Hypotension, Multiple System Atrophy (MSA), Familial Dysautonomia and Pure Autonomic Failure (PAF). This can mean: Rapid heart rate when standing  Problems with temperature regulation Needing to sit or lie down to avoid fainting, headaches, nausea and other symptoms Feeling worse in the heat Needing to pace carefully to avoid crashes Dysautonomia often appears invisible, but it has a significant impact on daily life. Raising awareness is the first step to better recognition, care, and support. MANAGEMENT APPROACHES: OI symptoms are one of the most treatable symptoms associated with ME/CFS and it is usually possible to increase functional capacity through the following management approaches: Increase blood volume by drinking water and consuming more sodium (if safe for you to do so). Provide mechanical support by using compression garments and postural counter manoeuvres (movement that moves the blood up the legs to the heart). Make lifestyle adjustments such as avoiding overheating, alcohol, large meals. Introduce movement or gentle exercise done in a lying down or recumbent position first. #DysautonomiaAwareness #MECFS #InvisibleIllness #POTS ___________________________ FURTHER READING: To find out more, we recommend: https://www.dysautonomiainternational.org Recording of our OI Presentation https://youtu.be/HSj8zcK7XK0?si=dgvFt_RuzUHcYhRI https://www.cdc.gov/me-cfs/media/pdfs/2025/06/CDC-Dysauto-MECFS-Dec-4-2024-Alt-Text-Final.pdf https://healthify.nz/health-a-z/p/postural-orthostatic-tachycardia-syndrome-pots ME/CFS Canterbury West Coast Disclaimer Previous Next

The School of Health, Victoria University of Wellington, has published a new Long COVID resource for GPs. Epidemiologist, Dr Mona Jeffreys, talked to us about how the resource was developed and how GPs can access it. < Back New Primary Health Care Resource for adults with Long COVID 19 Apr 2026 The School of Health, Victoria University of Wellington, has published a new Long COVID resource for GPs. Epidemiologist, Dr Mona Jeffreys, talked to us about how the resource was developed and how GPs can access it. Dr Mona Jeffreys, epidemiologist, and her team from Victoria University of Wellington, have recently published a new Primary Health Care Resource for adults with Long COVID for GP's. The resource was co-designed with people with lived experience of Long COVID and was funded by the Health Research Council of NZ. Mona spoke at our April Online meeting about how the resource was developed using the Standford model of Design-led Thinking. (The recording of the talk is now available on our YouTube channel.) This co-design approach ensured that patients and researchers were considered as equal partners, that lived experience shaped the content, and that the resulting tool met the needs of patients and health professionals. What’s in the Resource? The resource includes a one-page document that gives a visual overview for diagnosing and managing Long COVID in adults. It has clickable links through to detailed guidance. An additional pdf with further readings and resources is also included. Mona has said that this pdf will be easier for the university to maintain going forward, while the overview page is expected to remain static. Mona recommended that people use the Post Covid Symptom Map regularly as a way to monitor and share symptoms and severity. Key findings from the research project People reported significant impacts of Long COVID on themselves and their families, including: medical dismissal, symptoms framed as psychological, delayed diagnosis, fragmented, confusing care pathways, need to self-advocate and research with limited energy. It is clear that Long COVID affects all aspects of people’s lives. How patients changed the resource The experience of people affected by Long COVID highlighted that the resource must: Emphasise pacing, validation, and partnership. Frame mental distress as consequence not the cause. Warn against graded exercise therapy for people with post-exertional malaise (PEM). Highlight that there is no evidence that “brain retraining” can treat a physical condition. Emphasise the overlap with ME/CFS, but that other systems and hence symptoms are also prevalent. Artwork captures the lived experience Participants were invited to create artwork to explain the impact of Long COVID. This is an insightful example… "This is supposed to resemble a teardrop. That's how I feel, that I could just cry all the time. Around it are all the words that have been taken away from me, like independence, support, job, friends, GP, normal company, hospital, help, acknowledgement, compassion, activities, empathy, socialising, basic needs. The middle is me with a smiley face hoping one day my life is going to turn back round again." For Additional Info More about the project and copies of all outputs are available at www.wgtn.ac.nz/fehps/centres/health-services-research-centre/recent-projects/evidence-based-management-of-long-covid/management-of-long-covid-in-primary-care Previous Next

A brief introduction to Myalgic Encephalomyelitis / Chronic Fatigue Syndrome < Back ME/CFS a Brief Introduction 19 Jan 2026 A brief introduction to Myalgic Encephalomyelitis / Chronic Fatigue Syndrome View our carousel post on facebook ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) A Brief Introduction: Living with ME/CFS can be described as a profound, life-altering shift in how a person can exist in their own body. This debilitating impact is due to a broken energy system and dysfunction at a cellular level. Unfortunately, many people with Long COVID have the same experience. ME/CFS can be triggered in a few different ways; an infection (often viral), injury, surgery or other stressor. Recently there has been a huge increase in people with ME/CFS due to the Covid 19 Pandemic. Following infection, some people have developed Long COVID and now meet the diagnostic criteria for ME/CFS. The diagnostic criteria for ME/CFS gives some insight into the lived experience: ✦ Exhaustion: A body that feels “used up” by the smallest effort. It’s exhaustion that rest doesn’t fix. ✦ Post-Exertional Malaise (PEM): This is the crash that comes after physical, mental and other exertion. The crash might arrive hours after (say) a social event, or on the next day or two. Bed rest is likely needed after a PEM crash. ✦ Sleep issues: This can be needing to sleep a lot through to never waking up feeling refreshed. ✦ Cognitive dysfunction: “brain fog” that isn’t just fog. It's being unable to process information or recall things, and more. ✦ Orthostatic Intolerance: It’s feeling worse when moving to an upright position. Standing in a queue, in the shower, or at the kitchen sink, is problematic. Many other symptoms may be involved, such as pain, gut problems, and sensitivity to light, sound, smells. ME/CFS patients are categorised into four severities based on functional capacity. MILD | MODERATE | SEVERE | VERY SEVERE ✦ Mild - At least 50% reduction in pre-illness activity level. ✦ Moderate - Mostly housebound. ✦ Severe - Mostly bedridden. ✦ Very severe - Totally bedbound and in need of care for basic functions. STOP | REST | PACE Energy and activity management to balance activity and rest is the most important part of ME/CFS management. The goal of pacing is to minimise Post-Exertional Malaise, rather than eliminate it. 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

As we approach World ME Day on 12th May, ANZMES have released a powerful national press statement < Back World ME Day - Press Statement from ANZMES 7 May 2026 As we approach World ME Day on 12th May, ANZMES have released a powerful national press statement As we approach World ME Day on 12 th May, ANZMES have released a powerful national press statement calling for people with ME/CFS to be taken seriously, in healthcare, in policy and in everyday life. This year’s theme “Take ME Seriously” reflects what our community has been saying for decades: ME/CFS is a complex, multi-system illness that requires recognition, accurate diagnosis and appropriate support. Thousands of New Zealanders are living with ME/CFS, many are facing barriers to care, understanding and support. This campaign is a call to change that to ensure people with ME/CFS are believed, supported and given access to the care they need. We encourage our community to take a moment to read and share this important release and join us in raising awareness this World ME Day. https://anzmes.org.nz/world-me-day/take-me-seriously-2026/ #TakeMESeriously #WorldMEDay #MECFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #EducateME Previous Next

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

We are excited to announce the three winners of our 2026 Crash Wear Merch Design Competition. < Back Announcing Winners of the 2026 Crash Wear Merch Design Competition 12 Jun 2026 We are excited to announce the three winners of our 2026 Crash Wear Merch Design Competition. We are excited to announce the three winners of our 2026 Crash Wear Merch Design Competition. Each entry was unique and speaks to what ME/CFS Canterbury West Coast is all about, community, advocacy, and the lived experience of people with ME/CFS and Long Covid in Canterbury and the West Coast. The Winning Designs Rachel Rockell - Our Mission and Vision Rachel designed a blue hoodie that keeps our signature colour and logo on the front. On the back, yellow daisies sit alongside the mission and vision of ME/CFS Canterbury West Coast. Rachel chose daisies to represent friendship, joy, cheerfulness and loyalty, qualities she wants everyone who wears it to carry with them. [ Purchase Rachel's design here ] Karen Morton - Seven Spoons Karen's entry is a photograph from a larger photographic essay she is creating about Spoon Theory - the concept used by many people with chronic illness to describe living with limited and unpredictable energy. Seven blue spoons, intentionally blurred to reflect the brain fog that so many in our community live with every day. Her opening line says it simply: "I woke with only seven spoons today." [ Purchase Karen's design here ] Tamara Barker - Forget M.E. Not Tamara digitally drew a forget-me-not flower, duplicated in varying sizes and arranged into a circle, with the words Forget M.E. Not along the edge. The forget-me-not is a symbol long associated with ME/CFS, and for Tamara it represents the millions of people around the world who are missing from their lives because of this illness. [ Purchase Tamara's design here ] Take a look at all the merch options A couple of dollars from every purchase goes directly toward supporting people with ME/CFS and Long Covid in Canterbury and the West Coast so please check out our winning designs! Keywords: ME/CFS Canterbury, Crash Wear merch, ME/CFS design competition, Long Covid Canterbury, Myalgic Encephalomyelitis New Zealand, ME/CFS clothing New Zealand, Spoon Theory, ME/CFS awareness, chronic illness merch New Zealand, forget me not ME/CFS Previous Next

The 4th International Conference on ME/CFS, Long Covid and Gulf War Illness < Back ME CFS Canterbury Registered Nurses attend RID2025 12 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

Theme for this issue is responses in our annual survey. We also highlight some new guides for Ehlers-Danlos Syndrome and Dysautonomia < Back Our August 2026 newsletter is now available! 25 Aug 2026 Theme for this issue is responses in our annual survey. We also highlight some new guides for Ehlers-Danlos Syndrome and Dysautonomia We hope that you find something of interest in our latest newsletter. The newsletter includes the following items: Team updates including a heartfelt farewell to nurse Wendy Dragt Upcoming meetings Introducing our new Board Trustees - Sarah, Roslyn and Geraldine Feedback received in our Annual Survey New guides for Ehlers-Danlos Syndrome and Dysautonomia How to check you are enrolled for the general election and options for voting plus more. 41.4 August 2026 Newsletter - Responses in our Annual Survey .pdf Download PDF • 1.85MB Previous Next

Recording of a seated Tai Chi session for people with ME/CFS is now available < Back Wanting to try out seated Tai Chi? 30 Mar 2026 Recording of a seated Tai Chi session for people with ME/CFS is now available JIngjing Jackson, an experienced Tai Chi instructor, is leading three seated tai chi sessions for MECFS Canterbury this year. This is the first session recorded on 2nd March 2026 and is 35 minutes long. Tai Chi is a well-recognised body-mind movement and healing therapy, Published western research suggests that Tai Chi may help with post-intervention fatigue, depression, and anxiety and may improve sleep quality and mental function. Tai Chi may be a useful practice when you live with ME/CFS. WARNING: People with ME/CFS need to manage any physical or orthostatic exertion carefully to avoid triggering post-exertional malaise. People with POTS (Postural Orthostatic Tachycardia Syndrome) also need to avoid exacerbating symptoms. When following the movements on the video, please participate safely, within your activity and health condition limits. A previous 'Introduction to Tai Chi' presentation and session by Jingjing is also available to watch https://youtu.be/NI_6gUMImqo Session 2 is scheduled online for 1st June 2026 and Session 3 is scheduled for 7th Sep 2026. Previous Next

Gillian Watson, an MECFS Canterbury member, recently sat down with Oliver Lewis from stuff.co.nz and detailed her experiences with the ME/CFS. Being told to keep pushing was detrimental. < Back Christchurch chronic fatigue sufferer told it was all in her head 7 Dec 2019 Gillian Watson, an MECFS Canterbury member, recently sat down with Oliver Lewis from stuff.co.nz and detailed her experiences with the ME/CFS. Being told to keep pushing was detrimental. Gillian Watson recently sat down with Oliver Lewis from stuff.co.nz and detailed her experiences with the ME/CFS. "I was told it was all in my head so I kept pushing. Which is the worst thing you can do with Chronic fatigue syndrome. I did a degree in chemical engineering so I am, well I was, a smart cookie. I used to deal with complex analytical data in my work. I went from that to barely being able to budget at home." "Chronic fatigue syndrome isn't necessarily a degenerative disease but it can be if you keep pushing. And I believe that I wouldn't necessarily have the degree of difficulty I have with speaking and my mobility issues today if I'd got that message much sooner." Thank you Gillian for sharing some of your story with this debilitating illness. https://www.stuff.co.nz/national/health/117957344/christchurch-chronic-fatigue-sufferer-told-it-was-all-in-her-head Previous Next