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

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

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

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

Loungewear and accessories for the ME/CFS community. Made to be lived in, rested in, and seen in. Wear a hoodie or tshirt to tell some of your story. Make a statement while supporting our charity. 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

Health NZ has acknowledged that ME/CFS is a debilitating, long-term illness in the new Health Conditions section on their website. < Back New Health Information page for ME/CFS from Health NZ 22 Sept 2025 Health NZ has acknowledged that ME/CFS is a debilitating, long-term illness in the new Health Conditions section on their website. The Health Conditions pages are intended for the public to provide introductory information about health conditions and their causes, symptoms, diagnosis, and treatments. For Chronic Fatigue Syndrome, Health NZ highlights the key symptoms, the diagnostic criteria in use in New Health NZ has acknowledged that ME/CFS is a debilitating, long-term illness in the new Health Conditions section on their website. For Chronic Fatigue Syndrome, Health NZ highlights the key symptoms, the diagnostic criteria in use in New Zealand, the need to pace your activity to avoid triggering Post Exertional Malaise, and more. You can read the information and share it with whānau from here: https://info.health.nz/conditions-treatments/brain-and-nerves/chronic-fatigue-syndrome It’s worth mentioning that GPs have access to more extensive clinical guidance for ME/CFS on Health NZ’s Health Pathways website for doctors. The Health Pathways for ME/CFS was updated and extended in February 2025, so do ask your GP if they have read the guidance for ME/CFS on Health Pathways recently. 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 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 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 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-members and whanau are also welcome to attend. 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 Intervention Fund We operate a small Intervention Support Fund to cover semi-urgent costs that members are unable to manage. 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 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 Advocacy We are involved with advocacy at an organisational level, both regionally and nationally. READ MORE

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 29 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

Feeling creative and got some extra spoons? Turn them into something that speaks for our community with our Crash Wear Design Competition. We’re looking for ME/CFS or Long Covid themed designs for our Crash Wear merch, something that captures the lived experience of ME/CFS and Long Covid. < Back The 2026 Crash Wear Design Competition 11 Apr 2026 Feeling creative and got some extra spoons? Turn them into something that speaks for our community with our Crash Wear Design Competition. We’re looking for ME/CFS or Long Covid themed designs for our Crash Wear merch, something that captures the lived experience of ME/CFS and Long Covid. Three winning designs will be featured on ME/CFS Canterbury “Crash wear” merchandise and the winners will receive one crash wear item of their choosing featuring their design. Entries close Saturday, 31st May 2026, and winners will be announced on Friday 12th June 2026. Check out the current Crash Wear range at https://mecfscanterbury.digitees.co.nz Conditions of Entry Eligibility: Entry is open to members, caregivers, and family/whānau of people living with ME/CFS or Long COVID in the Canterbury and West Coast regions. Entry Period: Entries open upon announcement and close at 11:59pm, 31 May 2026 (NZST) Number of Entries: You may submit as many designs as your energy allows, no pressure to overdo it. Original Work: All submissions must be the entrant’s original work and must not infringe on any copyright, trademark, or intellectual property rights. Design Requirements: Designs should reflect themes relevant to ME/CFS and/or Long COVID. Artwork must be suitable for printing on merchandise e.g. clothing, accessories. Colours do not need to be limited to the existing colour palette of our Crash Wear (blue and white). Final files may be requested in a high-resolution format if shortlisted. We will also accept draft entries from people who have a good idea but not the skills or tools to create high quality art. If your design is the winner, we can arrange for the artwork to be done. Use of Entries: ME/CFS Canterbury may display submitted designs (with credit) on social media for promotional purposes related to the competition, unless the entrant requests otherwise. Selection of Winners: Entries will be reviewed and three winning designs selected by a panel of ME/CFS Canterbury staff, volunteers, and members. W inners will be announced on Friday 12th June 2026 on https://www.mecfscanterbury.nz/news-1 and by email. Prize: The three winning designs will be featured on ME/CFS Canterbury “Crash wear” merchandise and the winners will receive one crash wear item of their choosing featuring their design. The item of clothing or accessory can be selected from the range available from Digitees. View the selection at https://www.digitees.co.nz/create. Artist Credit & Rights: Artists will be credited wherever reasonably possible. If your design is selected as a winner, the rights to the design are transferred to ME/CFS Canterbury for use in promotional, fundraising, and merchandising purposes. Content Guidelines: Designs must not include offensive, discriminatory, or inappropriate material. ME/CFS Canterbury reserves the right to exclude any entry that does not align with its values. Changes & Decisions: ME/CFS Canterbury reserves the right to amend these conditions or cancel the competition if necessary. All decisions are final, and no correspondence will be entered into. Submit Your Entry Submit here Feel free to email us on info@mecfscanterbury.nz if you have any questions. Previous Next

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

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 17 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

Share this information about long COVID, it's management and some FAQs < Back New Long COVID Guidance on Healthify 30 Oct 2026 Share this information about long COVID, it's management and some FAQs Healthify is a trusted New Zealand website providing easy-to-understand health information and self-help resources for the public and guidance for health practitioners as well. The site is endorsed by the Royal NZ College of General Practitioners. Recently, we were invited by Healthify to assist with updating the content for long COVID. We reached out to Long Covid Support Aotearoa to work with us on this, and were delighted to have Catherine Appleby, LCSA committee member and a Nurse Practitioner, lead the development of the detailed content. Take a look at the new information which is spread across three pages. You may find it useful to share with your whānau and health team as well. Overview of long COVID Management of long COVID Long COVID FAQs Thank you to Catherine Appleby, Amanda Wyatt, our Nurse Team Lead, and Claire Budge, Clinical Editor at Healthify, for the huge amount of work on this project. Note: The accompanying information for health professionals still needs to be updated. Previous Next