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- News (All) | MECFS Canterbury
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 VIEW OUR NEWSLETTERS Latest News We plan to share key updates about ME/CFS, Long COVID, 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. 7 Jul 2026 ‘I feel trapped’: 29-year-old Wellington woman hasn’t left upstairs bedroom for four months Paddy Gower Does Stuff: Woman hasn’t left upstairs bedroom for months Read More 23 Jun 2026 2026 Annual Survey – Open Now Your feedback shapes what we do... Read More 21 Jun 2026 Find Support After an ME/CFS or Long Covid Diagnosis in Canterbury and the West Coast Being told you have Myalgic Encephalomyelitis (ME/CFS) or Long Covid can feel overwhelming and isolating. Read More 12 Jun 2026 Announcing Winners of the 2026 Crash Wear Merch Design Competition We are excited to announce the three winners of our 2026 Crash Wear Merch Design Competition. Read More 6 May 2026 World ME Day - Press Statement from ANZMES As we approach World ME Day on 12th May, ANZMES have released a powerful national press statement Read More 26 Apr 2026 Check out our display at Tūranga Library for World ME Day A big thank you to the librarians at Tūranga, the central Christchurch City Libraries Library, for helping us to profile ME/CFS for this World ME Day. Read More Load More
- New guidance from CDHB for physiotherapists | MECFS Canterbury
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
- Support our Impact | MECFS Canterbury
Can you help support what MECFS Canterbury does to meet the growing, unfunded need of people living with ME/CFS and Long COVID in Canterbury and the West Coast? Support our Impact OUR PURPOSE That every person with ME/CFS and Long COVID in Canterbury and the West Coast lives the best quality of life possible . ME/CFS has the lowest health-related quality of life of twenty major illnesses studied — yet there are no specialist clinics, no specialising GPs, and no public health funding for this community in our region. We are the only locally based organisation filling that gap, and the need is growing. HOW WE WORK Five programme areas, one purpose. Select a programme area to see what we deliver and the difference it makes for people with ME/CFS and Long COVID, their whānau, and the wider health system. Information Sharing & Validation Clinical Support Connections Practical Support Advocacy & Networking For many people, being believed and having access to good quality information is the first step towards living well with this illness. WHAT WE DELIVER Website, newsletter, and social media presence and campaigns Group meetings with discussion and presentations Welcome information packs, library, and other resources Contribution to Health Pathways content for health professionals Contribution to public-facing content on Health NZ topics WHAT CHANGES Illness experience is acknowledged and validated Clarity around suitable approaches for managing the illnesses Sense of community and reduced feelings of isolation Improved wellbeing and support for whānau Wider awareness of ME/CFS Most people with ME/CFS are socially isolated. Connection is care. WHAT WE DELIVER Online peer support groups on Facebook In-person and online facilitated meetings Informal social catch-ups and activities One-on-one connections with friendly callers WHAT CHANGES Sense of community and understanding Friendships Reduced isolation Improved wellbeing Our nurses are often the first professional that people have seen who have understood their illness. WHAT WE DELIVER Diagnostic assessments and support with symptom management Support with common comorbidities Advocacy with each client's health team Referrals to other health and social services Support for students at the Southern Regional Health School Education for health professionals, whānau, teachers, and others WHAT CHANGES Expert assessment gives clients clarity about their health issues GPs are supported to diagnose with confidence Tailored guidance, improved functionality, and improved wellbeing Accommodations from whānau, educators, and workplaces Fewer people attending the Emergency Department Many people in our community live with no or limited support and in poverty. Practical help and information eases the daily load. WHAT WE DELIVER Work and Income Advocacy Service Living with ME/CFS section on our website Outreach volunteers for gardening, housework, friendly contact, and more Equipment for loan and an intervention fund Health and wellbeing activities, such as online Tai Chi, and art and craft sessions WHAT CHANGES More stable income from MSD Reduced stress and awareness of supports available Support to reduce symptom flares Improved wellbeing Changing the system and awareness so our community is understood and supported everywhere they go. WHAT WE DELIVER Submissions to government with other ME/CFS organisations Collaboration on national awareness campaigns Education and guidance for health professionals Relationship with Health NZ Sharing resources and collaborating with the wider health and community sector WHAT CHANGES Increased understanding of ME/CFS in government departments and the health and community sectors Increased public awareness Improved support from others Reduced stigma 2,814+ people in our region living with ME/CFS 33,053+ people in our region living with Long COVID post-viral fatigue 0 GPs in our region specialising in ME/CFS $0 Health NZ | Te Whatu Ora funding THE FUNDING GAP A clinical service running entirely on grants and donations. 75% of people with ME/CFS cannot work or attend school , and 25% are severely unwell and bed-bound. Despite this, our community receives no targeted support from the public health system. Our Registered Nurse service, advocacy, and community supports cost $200,000+ a year — funded entirely by community foundations, gaming trusts, charitable trusts, and donations. Right now 55 people sit on our nurse service waiting list , facing up to a seven-month delay, because capacity is limited by funding alone. Long COVID has made a historically under-recognised illness an urgent and growing one. Every dollar donated goes directly to a community no one else is funded to serve. $0 PUBLIC HEALTH FUNDING Donate Now OUR KEY OBJECTIVES What we are working towards Diagnosis and symptom management Enable people to access a diagnosis and receive support with managing their symptoms. Financial support Enable people to explore and obtain the financial support available from the government. Community and validation Enable community connections, provide validation, and reduce isolation Education and information Provide education and information for health professionals and for self-management. OUR VALUES Compassion Respect Equity Patient-centred Collaboration We are informed by the Code of Health and Disability Services Consumers' Rights, and the Hui Process and Meihana Model for building client relationships. OUR REACH Demand for our services keeps growing Figures for the year ending 31 August 2025, with 2022 comparisons where available. 292 clients in our Registered Nurse service this year (437 enrolled since 2020) 13 students supported at the Southern Regional Health School 631 newsletter subscribers ▲from 160 in 2022 777 Facebook page followers ▲ from 252 to 2022 560 online peer support forum members ▲from 230 in 2022 53 paid staff hours per week (1.33 FTE) ▲ from 38 to 2022 74 clients assisted by our Work and Income Advocacy Service 47 volunteer hours per week ▲ from 25 in 2022 All of this was delivered by 1.33 full-time-equivalent paid staff, supported by volunteers - many of whom live with the illness themselves. Can you volunteer with us? " If I hadn't met with the nurse who validated my experience of my chronic illness and advocated for me with my GP to obtain a diagnosis, I would not be here. Life had got too hard. Client of the MECFS Canterbury Registered Nurse Service WHY YOUR SUPPORT MATTERS The only door open to this community. There is no other local organisation or public service formally supporting people with ME/CFS and Long COVID in Canterbury and the West Coast. When someone is too unwell to work, study, or leave their home, we are where they turn. Funding is the only thing limiting our capacity. Our waiting list exists not because the need is unclear, but because grants and donations are our sole income. Your support directly extends a clinical and community service that the public system does not provide. ARE YOU IN A POSITION TO SUPPORT... A proven Registered Nurse Service with measurable outcomes - diagnosis, symptom management, and fewer emergency department visits Advocacy that lifts incomes and reduces stress for families living in poverty Connection and validation for some of the most isolated people in our region A growing need - an estimated 33,053 people in our region live with Long COVID post-viral fatigue Lean delivery - 1.33 FTE paid staff matched by nearly equal volunteer hours Donate Now Prevalence figures are conservative estimates: ME/CFS at 0.4% of population (1 in 250); Long COVID post-viral fatigue at 4.7% of population. Service statistics from the MECFS Canterbury Statistics Snapshot, year ending 31 August 2025.
- Online Community | MECFS Canterbury
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
- NICE releases new guidance for ME/CFS | MECFS Canterbury
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. < Back NICE releases new guidance for ME/CFS 28 Oct 2021 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. New NICE guideline creates hope - a paradigm shift in the care of people with #MEcfs Extracts from the Science for ME press release... "The National Institute for Health and Care Excellence (NICE, UK) has today, Friday 29 October 2021, published the guideline for #MyalgicEncephalomyelitis (or encephalopathy)/ #chronicfatiguesyndrome : diagnosis and management." "The guideline replaces the existing clinical guideline published in 2007 and aims to improve awareness and understanding about ME/CFS, provide guidance on when to suspect it (to enable earlier diagnosis), and includes recommendations on access to care, symptom management and care planning." "NICE staff and the members of the guideline committee have worked for over three years to carefully examine the evidence... The guideline is a publication of international significance, providing an example of good practice that will influence ME/CFS care around the world." - Including here in New Zealand. "The guideline makes it clear that graded exercise therapy (GET) should no longer be offered to people with ME/CFS, and that both cognitive behavioural therapy (CBT) and therapies based on physical activity are not curative. This is based on a review of the evidence, which rated the outcomes for studies of these interventions all of low or very low quality. This is a welcome and significant, evidence based change in approach from the 2007 ME/CFS guideline, in which CBT and GET were central to treatment. Link to the new NICE guidelines: https://www.nice.org.uk/guidance/ng206 Previous Next
- Mental Health Awareness Week 5-12 October 2025 | MECFS Canterbury
When living with chronic illness it is natural to grieve the losses and find it difficult to cope with at times. < Back Mental Health Awareness Week 5-12 October 2025 5 Oct 2025 When living with chronic illness it is natural to grieve the losses and find it difficult to cope with at times. View our campaign on our facebook Five ways to support mental wellbeing for ME/CFS We need to acknowledge that it is incredibly challenging living with a disabling chronic illness like ME/CFS. It can significantly reduce options and quality of life. It is natural to grieve the losses and to find it difficult to cope with at times, especially for those who are very unwell and not receiving much support. If you live with ME/CFS or long COVID we suggest the following strategies to support your mental wellbeing. If you have whānau affected by ME/CFS, we invite you to let them guide you on how you can support them to explore these strategies. ✦ Prioritise rest. Take regular rest breaks throughout the day. Rest before and after activities. Rest as soon as you notice symptoms increasing. ✦ Simplify. Prioritise what to spend your limited energy on. Find ways to do things that use less energy. ✦ Connect. Allocate time for friendships with people who understand or care. Join an online community of people who can relate to your experiences of chronic illness. ✦ Look for joy. Schedule in small activities or pastimes that you enjoy or that add lightness. ✦ One moment at a time. Acknowledge the challenges. Be patient with yourself. Practice gentle self-care. __________ . Need help now? Call/text 1737 (NZ) for free counselling support. Visit: mecfscanterbury.nz/living-with-me-cfs/mental-wellbeing for support options Disclaimer: https://www.mecfscanterbury.nz/about-us/disclaimer Previous Next
- Impact Map | MECFS Canterbury
The activities of MECFS Canterbury for our ME/CFS and long COVID community, and the outputs and outcomes from these. Five programme areas to make an Impact Select a programme area to see what we deliver and the difference it makes for people with ME/CFS and Long COVID, their whānau, and the wider health system. Information Sharing & Validation Clinical Support Connections Practical Support Advocacy & Networking For many people, being believed and having access to good quality information is the first step towards living well with this illness. WHAT WE DELIVER Website, newsletter, and social media presence and campaigns Group meetings with discussion and presentations Welcome information packs, library, and other resources Contribution to Health Pathways content for health professionals Contribution to public-facing content on Health NZ topics WHAT CHANGES Illness experience is acknowledged and validated Clarity around suitable approaches for managing the illnesses Sense of community and reduced feelings of isolation Improved wellbeing and support for whānau Wider awareness of ME/CFS Most people with ME/CFS are socially isolated. Connection is care. WHAT WE DELIVER Online peer support groups on Facebook In-person and online facilitated meetings Informal social catch-ups and activities One-on-one connections with friendly callers WHAT CHANGES Sense of community and understanding Friendships Reduced isolation Improved wellbeing Our nurses are often the first professional that people have seen who have understood their illness. WHAT WE DELIVER Diagnostic assessments and support with symptom management Support with common comorbidities Advocacy with each client's health team Referrals to other health and social services Support for students at the Southern Regional Health School Education for health professionals, whānau, teachers, and others WHAT CHANGES Expert assessment gives clients clarity about their health issues GPs are supported to diagnose with confidence Tailored guidance, improved functionality, and improved wellbeing Accommodations from whānau, educators, and workplaces Fewer people attending the Emergency Department Many people in our community live with no or limited support and in poverty. Practical help and information eases the daily load. WHAT WE DELIVER Work and Income Advocacy Service Living with ME/CFS section on our website Outreach volunteers for gardening, housework, friendly contact, and more Equipment for loan and an intervention fund Health and wellbeing activities, such as online Tai Chi, and art and craft sessions WHAT CHANGES More stable income from MSD Reduced stress and awareness of supports available Support to reduce symptom flares Improved wellbeing Changing the system and awareness so our community is understood and supported everywhere they go. WHAT WE DELIVER Submissions to government with other ME/CFS organisations Collaboration on national awareness campaigns Education and guidance for health professionals Relationship with Health NZ Sharing resources and collaborating with the wider health and community sector WHAT CHANGES Increased understanding of ME/CFS in government departments and the health and community sectors Increased public awareness Improved support from others Reduced stigma Want to help? We also have a single page pdf version of this Impact Map for you to view.
- ME/CFS and Long Covid | MECFS Canterbury
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
- World ME Day - Press Statement from ANZMES | MECFS Canterbury
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 6 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
- Christchurch chronic fatigue sufferer told it was all in her head | MECFS Canterbury
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 6 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
- Group Meetings and Events | MECFS Canterbury
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
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