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Today we want to congratulate the team involved in the establishment of Dysautonomia New Zealand and their progress in becoming a registered charity.   < Back Dysautonomia New Zealand 16 Feb 2026 Today we want to congratulate the team involved in the establishment of Dysautonomia New Zealand and their progress in becoming a registered charity. Today we want to congratulate the team involved in the establishment of Dysautonomia New Zealand and their progress in becoming a registered charity. They hope to fill the gap in response to a clear and ongoing need for greater awareness, support, and understanding of dysautonomia in Aotearoa New Zealand. Visit their website https://www.dysautonomianz.co.nz and sign up to their newsletters or offer your support. ___________________ Dysautonomia is an umbrella term for conditions where the autonomic nervous system (ANS) does not function as it should. The ANS controls automatic body processes like heart rate, blood pressure, digestion, and temperature regulation. When it malfunctions, everyday activities such as standing up, eating, or even concentrating can become challenging. Conditions include POTS (Postural Orthostatic Tachycardia Syndrome), Orthostatic Hypotension, Inappropriate Sinus Tachycardia and more. Previous Next

Sponsorship If your business or organisation is interested in supporting people living with ME/CFS, we would love to hear from you. There are opportunities to make a difference by sponsoring an event, service area, operational costs, funding key positions, and more. First Name Last Name Email Message Thanks for submitting! Send What to know more about us, our community, and our work? Review our introduction documents: Statistics Snapshot . Introduction to our Services and Community Needs . Testimonies and Service Statistics . Watch our 3-minute introductory video for potential funders...

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. < Back New clinical guidance for ME/CFS on HealthPathways 12 May 2025 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. '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. There is often standardised national content for a topic, with each region then providing local information to reflect local supports and services on the regions own view of the HealthPathways. We are excited to announce that the HealthPathways team published updated guidance for #MECFS (#MyalgicEncephalomyelitis / #ChronicFatigueSyndrome ) on the Canterbury Community HealthPathways website on 12th March 2025. This information is also available to GPs on the West Coast of NZ. The pathway includes current evidence-based best-practice clinical advice for health professionals. The update includes: • More information on criteria to help with diagnosis. • More information about assessing and supporting patients with severe ME/CFS. • Extended management guidance for specific symptoms. 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. Link: https://canterbury.communityhealthpathways.org/44978.htm Please reach out to MECFS Canterbury to access the latest research summaries and other guidance, or to assist you in other ways. ____________________________ We have prepared a letter about this new information for you to take to your GP, next time you visit. We want GPs to know about the new HealthPathway so that they can support you better. Click on this link to view and download the letter in our google drive... https://drive.google.com/file/d/19hkC_DkT4-7C0y2ALhgFFauTf9LZ6DR-/view?usp=drive_link ___________________________ FURTHER READING: To find out more, we recommend: ✦ For patients: www.healthinfo.org.nz/Chronic-fatigue-syndrome-CFS.htm ✦ Guidance from us: https://www.mecfscanterbury.nz/living-with-me-cfs ✦ CDC (USA): https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html ✦ NICE (UK): https://www.nice.org.uk/guidance/ng206 ✦ Mayo Clinic (USA): https://www.mayoclinicproceedings.org/article/s0025-6196(23)00402-0/fulltext ___________________________ DISCLAIMER: Please note that MECFS Canterbury does not recommend any treatments. Any advice, either explicit or implied, is not intended to replace qualified medical advice. We do not accept any responsibility for any treatment undertaken by readers of any articles or other content, or for any error or omission in connection with any content published on our social media. MECFS Canterbury is not responsible for the accuracy of content that we link to. The inclusion of such links does not imply endorsement by MECFS Canterbury. 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

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. < Back Mayo Clinic releases new consensus clinical guidance for ME/CFS 4 Sept 2021 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. The Mayo Clinic Proceedings publication is a premier peer-reviewed clinical journal for general and internal medicine, and is among the most widely read and highly cited scientific publications for physicians. The journal has recently published a consensus recommendation article "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management" by Lucinda Bateman et al (US ME/CFS Clinician Coalition). The lengthy article (14 pages + references) discusses diagnosis and management, and highlights: key biological impairments in ME/CFS. the need to identify/treat co-morbidities. why GET (Graded Exercise Therapy) is not recommended. the link to Long COVID. It is exciting that another leading health care publication is sharing up-to-date evidence based information about ME. Of note, this article cites research from exercise physiologist, Dr Lynette Hodges, Massey University, NZ. Author Dr. Lucinda Bateman notes, “There are many steps clinicians can take now to improve the health, function, and quality of life of people with ME/CFS, including those newly ill with ME/CFS following COVID-19. This guidance may also help Long COVID patients, even if they do not fully meet criteria for ME/CFS.” Please note that the medication section is based on the US environment, which has a large range of medications available and where clinicians are able to be more experimental with off-label prescriptions than in other countries such as NZ. For local guidance for NZ medical professionals, we recommend the NZ Doctor How to Treat: ME/CFS article. (Available https://m.e.awareness.nz/how-to-treat-mecfs .) Link: https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext Previous Next

Ways to Help The generosity of the wider community enables MECFS Canterbury to provide our services. We welcome all sorts of contributions whether it be specific expertise, practical help, or donations of money and goods. We currently do not receive any income from government health funds. We are grateful for your interest in our organisation and assure you that any contribution makes an important impact. Help a friend with ME/CFS READ MORE Volunteer READ MORE Donate READ MORE Fundraise READ MORE Buy from us READ MORE Support businesses in our community READ MORE Bequest READ MORE Sponsorship READ MORE

Buy from us 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 Trade Me store We sell a range of donated and fundraiser items on TradeMe, thanks to donors and volunteers. You may find something of use to you? VIEW OUR TRADEME LISTINGS ME/CFS Awareness Pins Wearing an enamel pin can be a great way to start a conversation about ME/CFS, to talk about the work of our charity, or to share some of your journey with the illness. We have three styles available to be worn at any time, but particularly around World ME Day on 12th May each year. Order from our office. Cost is $5 per pin and to post out to you. Our bank account is with Westpac 03-0802-0060232-000. Our legal name is 'ME/CFS Canterbury / West Coast Charitable Trust'. Blue Ribbon awareness Pin Forget Me Not single flower Pin Forget Me Not flower cluster Pin

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

Fundraise Do you have a birthday, anniversary, or other special occasion coming up? Or want to set yourself a physical challenge and participate in a running, cycling, swimming or triathlon event? Why not ask your whānau and networks to donate to MECFS Canterbury or sponsor your participation and raise some awareness at the same time? Want to host a fundraiser? Talk to us about setting up a fundraising page that links to MECFS Canterbury on sites such as Givealittle. First Name Last Name Email Message Thanks for your interest! Send Tshirts for fundraising events: If you are looking for tshirts that raise awareness of ME/CFS while you are doing your fundraising, we suggest you take a look at the range from M.E. Awareness NZ. SEE ALL M.E. AWARENESS NZ T SHIRTS

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. < Back ‘Years in Lockdown’ video for International ME Awareness Day, 12th May 2020 11 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. For ME Awareness Day 2020 we prepared a short 2.5 minute video to highlight that 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 who will stay in lockdown because they have ME/CFS.” https://youtu.be/vuRrh7NiknQ https://www.youtube.com/watch?v=vuRrh7NiknQ Previous Next

We have gathered some information that may help you to stabilise your symptoms and improve your quality of life in other ways. Topics include activity management, working with your doctor, financial assistance, and more. We will add to this over time, so please check back. Living with ME/CFS The best approach when learning to live with Myalgic Encephalomyelitis /Chronic Fatigue Syndrome is to implement regular rest and to prioritise what you spend your limited, faulty energy on – we call this ‘pacing’. This is understood to give you the best chance for improving. The aim of pacing is to minimise Post-Exertional Malaise (PEM) from occurring, to stabilise symptoms, and to avoid getting worse. It will take some time to explore: • what your activity limits are, • what activities you can manage and what you can’t, and • what approaches help and what don’t. Your energy and wellness levels may change over time, so what is manageable will change too. Unfortunately, there are no treatments that are proven to be completely effective for ME/CFS yet, and not everyone finds benefit from the same approaches. A silver lining of the COVID-19 pandemic is that there is more research underway into post-viral illness and this should bring insight and treatments for ME/CFS also. Despite the lack of evidence-based treatments, there are some supplements, medications, aids, and lifestyle changes available that may provide some relief from symptoms or improve your quality of life in other ways. We have provided information about what expert clinicians suggest and what the ME/CFS community have found helpful in the sections below and will add to this over time. Talk to one of our Registered Nurses and/or find a doctor you trust to work with you. They may be able to help with pain, sleep problems and orthostatic intolerance (problems with being upright) and managing food sensitivities, as well as arrangements for home care, financial support, and counselling. Please be aware that a lot of content online or in books is not evidence-based. More research is needed to fully understand the causes and best treatments for ME/CFS. DISCLAIMER: MECFS Canterbury does not provide recommendations for any treatments for your particular situation on this website. Any advice, either explicit or implied, is not intended to replace the qualified medical advice that is necessary for each individual. Please discuss any lifestyle and treatment changes with your doctor first. MECFS Canterbury does not accept any responsibility for any treatment undertaken by readers of any content or for any error or omission in connection with an article or content published on this website. Remember to give yourself permission to rest, practice pacing, accept offers of help, and to be kind to yourself. Activity Management READ MORE Working with your Doctor READ MORE Work and Income Assistance READ MORE Practical Supports READ MORE Lifehacks and Tips READ MORE Supplements and Treatments READ MORE Managing Specific Symptoms READ MORE Mental Wellbeing READ MORE How We Help READ MORE Easy and Ready-Made Meals READ MORE Crash Wear Merchandise READ MORE Discounts for our Community READ MORE