Search Results

< Back It’s our 40th Ruby Anniversary! 31 Oct 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

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 Latest News We plan to share key updates about ME/CFS 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. 31 Oct 2025 It’s our 40th Ruby Anniversary! Thank you to the individuals and funders who have supported our journey since we became a charity in 1985. Read More 8 Oct 2025 October is Dysautonomia Awareness Month Dysautonomia often appears invisible, but it has a significant impact on daily life. Read More 5 Oct 2025 Mental Health Awareness Week 5-12 October 2025 When living with chronic illness it is natural to grieve the losses and find it difficult to cope with at times. Read More 3 Oct 2025 New West Coast Peer Support Group Join our new facebook group for people affected my ME/CFS and Long Covid living on the West Coast Read More 22 Sept 2025 New Health Information page for ME/CFS from Health NZ Health NZ has acknowledged that ME/CFS is a debilitating, long-term illness in the new Health Conditions section on their website. Read More 1 Sept 2025 Orthostatic Intolerance and its management Presentation We invite you to watch Nurse Wendy Dragt’s talk about Orthostatic Intolerance (OI) and its Management – now available on our youtube channel Read More 1 Aug 2025 Join our quiet act of solidarity for people with severe ME/CFS on 8th August 8pm #LightsLowForME creates a visible, low effort way for allies to show solidarity while honouring the often-invisible suffering of people with severe ME Read More 18 Jul 2025 Launch of our Crash Wear 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. Wear your story. Support your community. Read More 12 May 2025 New clinical guidance for ME/CFS on HealthPathways 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. Read More 8 May 2025 ME/CFS and its Management Presentation We invite you to watch Nurse Wendy Dragt’s talk about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and its Management – recording now available on our youtube channel. Read More 6 May 2025 BHC publishes Clinical Care Guide The Bateman Horne Centre based in Utah, USA, is one of the leading ME/CFS clinical education organisations in the world. In May they released an excellent 96 page ‘Clinical Care Guide: Managing ME/CFS, Long COVID...' Read More 4 Apr 2025 Ehlers-Danlos Syndrome (EDS) and Hypermobility Disorders presentation Wendy Dragt, a nurse at MECFS Canterbury, recently presented an overview of Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD) for us. The talk covered definitions, diagnosis, management, plus more. Read More 28 Oct 2021 NICE releases new guidance for ME/CFS 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. Read More 24 Oct 2021 Article in The Spinoff discussing support needed for people with long Covid Tom Harris, a member of MECFS Canterbury, writes for The Spinoff and asks ‘If you get long Covid, who’s going to help?’ Read More 4 Sept 2021 Mayo Clinic releases new consensus clinical guidance for ME/CFS 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. Read More 25 Jun 2021 New guidance from CDHB for physiotherapists 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. Read More 22 Dec 2020 New guidance for ME/CFS from CDHB for allied health professionals 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. Read More 10 Sept 2020 New public guidance from CDHB on ME/CFS Announcing updated information about Myalgic Encephalomyelitis /Chronic Fatigue Syndrome on the Healthinfo site for people living in Canterbury. This provides clear, reputable guidance from the CDHB about ME/CFS that will raise understanding and awareness. Read More 11 May 2020 ‘Years in Lockdown’ video for International ME Awareness Day, 12th 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. Read More 6 Dec 2019 New Guidance on ME/CFS for Canterbury GPs Canterbury District Health Board's diagnostic and management information for ME/CFS has now been updated with input from MECFS Canterbury. This provides GPs in the region with evidence-based guidance and best practice. Read More

Over time, you will discover ways that work for you to save your energy and help to make your everyday activities more manageable. It can be really useful to hear from others what they to do make things simpler and to reduce symptom flares. Lifehacks and Tips Over time, you will discover ways that work for you to save your energy and help to make your everyday activities more manageable. It can be really useful to hear from others what they to do make things simpler and to reduce symptom flares. Anna-Maria's Lifehacks Anna-Maria Covich has collated a range of life hacks learnt from managing (and often failing to manage) her ME/CFS over many years. We invite you to watch the recording of her presentation on her tips and tricks and why she finds them helpful. Whether you are newly diagnosed with ME/CFS or have some experience living with ME/CFS, you are likely to find some new ideas for saving energy and managing symptoms from this session. View the presentation on YouTube or review the pdf of the slide deck . We also have printed booklets of the slide deck - feel free to order a copy from our library. To discuss this topic further, come along to one of our meetings or connect with others online. Other Resources Library of articles on www.cfsselfhelp.org/library from the ME/CFS and Fibromyalgia Self-Help Program, a non-profit organisation founded by Bruce Campbell, PhD, a recovered CFS patient. The ME/CFS Crash Survival Guide from Bateman Horne Centre, USA. Advice from ME Association UK, who are strongly evidence-based. They provide general guidance and leaflets covering a wide range of topics meassociation.org.uk/free-literature-downloads/ Visit our Links page for more information.

Meet our Team Governance Board Rose Camp Chairperson Rose joined the MECFS Canterbury committee in 2019, with a focus on improving how people with ME/CFS are treated by the health system. Both Rose and a family member have ME/CFS, and she is currently unable to work consistent regular hours because of it. Rose has a background in software development (as a tester), and in charity administration. With Nicola Stokes, our Manager, Rose forms a part time Leadership Team to manage our organisation and services. Nicola McDowell Secretary We have had the privilege of having Nicola on our committee since November 2021. Nicola brings the lived experience to our discussions and written material, as she has had ME/CFS and Fibromyalgia since 2003. Her health has significantly interrupted her professional career as a biologist, teacher, and librarian, but she has enjoyed volunteering and contributing to a variety or community organisations over the years. Siju Thomas Treasurer Siju kindly joined our committee in February 2024, to help us monitor our cashflow and grants pipeline, and to participate in governance discussions. Siju brings experience in financial management overseas and is a semi-qualified Chartered Accountant. Karen Lawton Karen joined the MECFS Canterbury committee in February 2022, as a consequence of having a family member who lives with ME/CFS and its impacts. Karen has experience in writing applications for government funding for companies, in sponsorship and funding for various regional and national photographic events, and as registrar for the NZ Acupuncture Standards Authority. Her main focus for our organisation is to ensure that the organisation attracts funding to sustain and grow the support that is available to our local ME/CFS community. Tom Harris Tom joined MECFS Canterbury and the Committee in April 2022. He has had CFS on and off for about 8 years. Tom trained as a psychology researcher, is an avid follower of new ME/CFS research (which he blogs about) and contributes to the quality of our written material and awareness raising activities. Ruth Keating Ruth joined our Board in January 2025, and brings experience as a lawyer working in NZ, London and Melbourne in both large firms and most recently in house as a General Manager. Ruth has a rare auto immune condition and has lived experience with Chronic Fatigue, and has had to stop working. Since 2022 she has been solely focusing on furthering her Governance career in Not for Profit entities. She is a Chartered Member of the NZ Institute of Directors. Greta Bond Greta joined our Board in September 2025, and brings experience as CEO of Aged Concern Canterbury and a previous project specialist role with the Canterbury District Health Board. Advisors Jan Barber, Board Advisor Jan is a Clinical Pharmacist by training but since 1997 worked in various roles in the New Zealand health system, including the Health Funding Authority, General Practice Organisations and Regional District Health Board organisations. From 2011 until May 2017, she was employed by the five South Island DHBs as the General Manager of the South Island Alliance Programme Office (SIAPO). Jan also has a history of governance experience for netball charities. Jan joined our committee in Feb 2021 and made significant contributions around strategy, governance processes and recruitment. In January 2025 she resigned from our Board, but continues to provide valuable support. Angus Mackay, Science Advisor Dr Angus Mackay joined us as Science Advisor in April 2024. The role is designed t o support our staff and our services by providing evidence-based scientific information on ME/CFS. This advisory role is non-clinical. Angus brings both the ability to carry out in-depth reading of published research, and also, a personal understanding of ME/CFS having developed the illness in 1995 after contracting glandular fever. Angus graduated with a PhD from the University of Otago in April 2023 after publishing several papers on his literature /theory-based neuroinflammatory hypothesis for ME/CFS that is also applicable to Long-COVID related post-viral fatigue syndrome (same model, different trigger). Operations Staff Rose Acting Manager Rose has stepped in as Acting Manager until we have worked through our recruitment process for a new part time Manager. Rose has responsibility for developing appropriate services, building our team of employees and volunteers, and networking with other service providers. Amanda Registered Nurse Amanda joined our team in January 2023 in a part-time role. She brings experience in community nursing, where she supported people with palliative care, wound care, and chronic health conditions. Wendy Registered Nurse Wendy joined our team in March 2024 in a part-time role. She has a community nursing background and spent most of her working life in South Auckland. She has personal experience of ME/CFS having a close family member who lives with it. Beth Intern Psychologist Beth is a registered Intern Health Psychologist working with us for 2025. She is an experienced mental health and trauma therapist and has a strong foundational knowledge of ME/CFS and Long Covid. Health Psychologists seek to help people cope with the emotional and psychological impacts of adjusting to living with chronic physical health problems, and to foster hope for the future. Rose-elle Work and Income Advocate Rose-elle is a social work student and joined our volunteer Outreach team in 2022. She moved into a part time Work and Income Advocacy role for us in 2023. Vacant Volunteer Coordinator We are currently recruiting for a Coordinator for our Volunteer Outreach Service. This is an important role and involves onboarding volunteers and matching these to clients who need practical or friendly support. Mell Office Administrator Mell joined us as volunteer Office Administrator in April 2025 to support our team. Mell became a part-time employee in October 2025. She responds to email and phone queries, looks after our library, helps prepare documentation, plus a wide range of other tasks. Hannah Accounts Administrator Hannah joined us in May 2021 to be our part time volunteer Office Administrator, later moving to an employed capacity. In January 2023, she changed focus to the Accounts Administrator role and now looks after our day-to-day financial accounts. She manages these tasks while living with ME/CFS and POTS. Tamara Social Media Coordinator Tamara joined us in this volunteer role in December 2024. Tamara posts content on our social media channels to raise awareness of ME/CFS, our services and guidance for living with ME/CFS and related conditions. Desiree North Canterbury Support Desiree has been a volunteer with us since March 2024 in a Client Outreach and Support role. She helps connect people in our ME/CFS community with others and the wider community. She also provides assistance for working through a next step, developing a special interest, or just catching up with a friendly call. Desiree also helps facilitate our group meetings in Rangiora.. Jordan Christchurch Support Jordan began volunteering with us in the Client Outreach and Supports role for Christchurch in July 2025. She has a BSci in Genetics and is currenlty doing a Masters in Nursing. Jordan is available to provide assistance for working through a next step, developing a special interest, or just catching up with a friendly call or visit. Rissa South Canterbury Support Rissa has provided advice around Work and Income benefits and allowances on a volunteer part time basis for us since February 2022. In the end of 2023, she moved to Waimate and is providing local support and facilitating gatherings in Timaru for people with ME/CFS. Vacant Mid Canterbury Support We are looking for a volunteer to be our Client Outreach and Support in Mid Canterbury. This position helps connect people in our ME/CFS community with others and the wider community. The volunteer also provides assistance for working through a next step, developing a special interest, or just catching up with a friendly call or visit. They may also help facilitate our group meetings in the area e.g. in Ashburton. Vacant West Coast Support We are looking for volunteers to be our Client Outreach and Supports on the West Coast. This position helps connect people in our ME/CFS community with others and the wider community. The volunteer also provides assistance for working through a next step, developing a special interest, or just catching up with a friendly call or visit. They may also help facilitate our group meetings in the area. e.g. Westport, Greymouth, Hokitika, Reefton. Andy Video Editor Andy joined us in November 2024 as a volunteer. He edits the recordings from our educational sessions so that we can share these on our YouTube channel. Stéphanie Seller of Donated Goods Stéphanie joined us in December 2022 as a volunteer to sell items that are donated to us on Trade Me. She manages the listings and sales interactions, and helps us increase our income. Jill Afternoon Tea Host Jill joined us in April 2022 as a volunteer. She home bakes delicious gluten free and dairy free treats for our afternoon teas at our group meetings. Volunteers We have a remarkable team of volunteers who contribute to our organisation or support people one-on-one. Some help with one-off projects and others help on a regular basis. Their support makes a real difference to the lives of the people in our ME/CFS community. FIND OUT MORE ABOUT VOLUNTEERING

< 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

< 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

< Back Article in The Spinoff discussing support needed for people with long Covid 24 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

< Back New guidance for ME/CFS from CDHB for allied health professionals 22 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

< 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

< Back New West Coast Peer Support Group 3 Oct 2025 Join our new facebook group for people affected my ME/CFS and Long Covid living on the West Coast In response to requests from our community on the West Coast, we have created a new Facebook group. We hope the new private group will help people living with ME/CFS and long COVID in the West Coast region to connect and support each other, as well as share information about local events and services. It will also allow us to keep you up to date with our meetings and other initiatives in your region and provides a space for people to self-organise local social catchups. Please request to join the group by visiting www.facebook.com/groups/mecfssupportgroupwestcoast Previous Next

< 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 Previous Next

< Back October is Dysautonomia Awareness Month 8 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