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

Theme for this issue is Long COVID. We highlight recent articles in the media and a new Long COVID Primary Care Resource < Back Our April 2026 newsletter is now available! 15 Apr 2026 Theme for this issue is Long COVID. We highlight recent articles in the media and a new Long COVID Primary Care Resource We hope that you find something of interest in our latest newsletter. The newsletter includes the following items: A new Long COVID Primary Care Resource Long COVID in the news Our new Medical Advisor Increased prescribing lengths Blue Sunday, the Tea Party for ME Invitation to enter our Crash Wear Design Competition Upcoming meetings plus more. 41.2 April 2026 Newsletter - Long COVID .pdf Download PDF • 2.22MB 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.

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 23 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

Thank you to the individuals and funders who have supported our journey since we became a charity in 1985. < Back It’s our 40th Ruby Anniversary! 1 Nov 2025 Thank you to the individuals and funders who have supported our journey since we became a charity in 1985. People often tell us that our charity is the only health service that has understood their life with debilitating chronic illness and provided appropriate clinical, lifestyle, social and other supports. I was overwhelmed, unsure where to start, and felt like no one really understood what I was going through. The support I received here changed that. You helped me feel seen and supported at a time when I was struggling to advocate for myself. A response in our 2025 Survey. We welcome donations to mark this occasion and to enable us to continue to support our vulnerable chronically ill community over our 41st year. Are you able to join our Ruby Crew ? In the last year alone... 277 people enrolled in our Registered Nurse Service to receive support for diagnosis, symptom management, and advocacy. 74 people supported by our advocates to explore the financial assistance available to them from Work and Income NZ. 45 group meetings held around our region to provide connections and education. 574 members: people receiving our updates or engaging with our services in some way. 631 subscribers of our newsletter, including professionals. 8 educational events and material delivered for professionals supporting our community. $0 received from the government’s health budget. We invite you to share this campaign to spread the word. Thank you! Ways to donate: Visit www.givealittle.co.nz/org/mecfs-group-canterbury-inc Use our donation form to pay by debit, credit card, or Google Pay www.mecfscanterbury.nz/donation-form Purchase something from our Crash Wear Merchandise range www.mecfscanterbury.digitees.co.nz Visit www.mecfscanterbury.nz/donate for other ways to contribute For more information about us visit www.mecfscanterbury.nz/how-we-help Link to Disclaimer: www.mecfscanterbury.nz/about-us/disclaimer Previous Next

#LightsLowForME creates a visible, low effort way for allies to show solidarity while honouring the often-invisible suffering of people with severe ME < Back Join our quiet act of solidarity for people with severe ME/CFS on 8th August 8pm 1 Aug 2025 #LightsLowForME creates a visible, low effort way for allies to show solidarity while honouring the often-invisible suffering of people with severe ME On August 8 at 8:00 PM, we invite you to join us in a quiet act of solidarity to symbolise the isolation and extreme light sensitivity experienced by people with Severe ME. #LightsLowForME creates a visible, low effort way for allies to show solidarity while honouring the often-invisible suffering of people with severe ME. Severe ME Day honours the 25% of people with #MyalgicEncephalomyelitis who are housebound or bedbound living with the most disabling form of this illness. Many live in quiet, darkened rooms, often unable to eat and requiring care to carry out daily activities. What to do?: At 8:00 PM on August 8, please join us and dim your lights or sit in darkness for a few moments of quiet reflection. If you wish to, take a photo of a candle, soft light or darkened space and share it to your social media. Or use our #LightsLowForME frame or images shared below. Share a quote or fact about Severe ME or use one of our post templates and caption examples. Remember to use the hashtags #LightsLowForME #SevereMEDay and #RememberTheUnseen to quietly show your support. Image Frame: Apply our #LightsLowForME frame to your photo... https://www.canva.com/design/DAGux3PkxTg/p3cun_KzlKxQSH9vhu2KNQ/view?utm_content=DAGux3PkxTg&utm_campaign=designshare&utm_medium=link&utm_source=publishsharelink&mode=preview Downloadable Images: Post one of our images... https://www.canva.com/design/DAGuzF_JT6o/geIqr1l1LTL_b_eb9DBrOQ/view?utm_content=DAGuzF_JT6o&utm_campaign=designshare&utm_medium=link&utm_source=publishsharelink&mode=preview Caption Example 1: I’m turning my #LightLowFor ME this Severe ME Day in solidarity with those forced to live in silence in darkened rooms. #SevereMEDay #RememberTheUnseen Caption Example 2: Tonight at 8:00 PM, I turned my #LightsLowForME for those who live in darkness. Not by choice, but because their bodies cannot tolerate light, sound or touch. Severe ME is a devastating illness, often rendering people bedbound, unable to speak, eat, or even tolerate gentle light. This is for them. We see you. We honour you. #SevereMEDay . We particularly encourage mildly affected followers if they have capacity and allies to carry this message forward. Your participation amplifies the realities of those who don’t have a voice and can't be seen or heard right now in quiet solidarity. For more information about Severe ME: https://www.mecfscanterbury.nz/severity https://anzmes.org.nz/severe-me-day-remembering-the-unseen/ 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

Your feedback shapes what we do... < Back 2026 Annual Survey – Open Now 24 Jun 2026 Your feedback shapes what we do... Each year we ask our community how we're doing and what would make a difference. This is that. The survey has six optional questions and takes between three and ten minutes, depending on how much you have to say. All questions are optional, answer one or answer all of them. Your feedback helps us to prioritise how we use our limited resources and gives us something concrete to share with funders and supporters. We want to hear what has worked, what hasn't, and what would actually help. Both positive experiences and honest critique are useful to us. All responses are anonymous unless you choose to share your details. ✦ Survey closes: Thursday 16 July 2026 ✦ Take the survey here Ngā mihi, Rose, Greta, Siju, Karen, Tom, and Ruth The Board of ME/CFS Canterbury / West Coast Charitable Trust 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

Radical Rest Challenge - Nominate a friend or two (or yourself) < Back Give-a-little Day 2nd December 2025 20 Nov 2025 Radical Rest Challenge - Nominate a friend or two (or yourself) This Give-a-Little day, we’re inviting our extended community to slow down... Radically! People living with ME/CFS and Long Covid don’t get to choose to rest. It’s not self care... it’s survival. For many people with ME/CFS, especially the approximately 25% living with Severe ME/CFS, even seemingly small activities cause debilitating symptoms. With a broken energy system at a cellular level, it is critical to #StopRestPace and #PlanPacePrioritise to stabilise symptoms and avoid reducing functionality further. So here’s our #RadicalRestChallenge challenge: ✦ Nominate a friend or two (or yourself) ✦ Radically Rest for 25 minutes – This means no screens, no distractions, just full rest with eyes closed. ✦ Donate $10 to support people in our community living with ME/CFS and Long Covid. If you try the #RadicalRestChallenge but can’t make it through the full 25 minutes that’s ok, It’s harder than it sounds! For every minute you can’t complete, add $1 per minute to your give-a-little donation total. It’s a lighthearted challenge with a serious message: for people with ME/CFS, rest is not optional... it’s essential! Let’s show up for those who can’t - by resting with them or donating for them. ✦ Date: Tuesday 2 nd December 2025 ✦ Where: Visit our give-a-little page https://givealittle.co.nz/org/mecfs-group-canterbury-inc ✦ Challenge: #RadicalRestChallenge #GiveALittleDay Every dollar and every moment of awareness makes a difference. Haven't heard the term before? What is Radical Rest? It means complete, uninterrupted rest. No screens, no conversations, no stimulation. People often opt for earplugs and an eye mask. It's a level of stillness that people with ME/CFS rely on to prevent worsening symptoms and to allow their bodies to try and maintain baseline. Download our Radical Rest Challenge poster to share with others. Previous Next