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Spectrum of Severity The severity of ME/CFS is on a spectrum. The level of symptoms and severity experienced by each person with ME/CFS is unique and is likely to fluctuate over time. Some people do improve or go into remission for periods of time. Often those who are most severely unwell are those who were not given the advice to rest and pace activites when first unwell. Historically, four general terms are used to categorise the wide spectrum of disease severity and functional impairment seen in ME/CFS: Mild, Moderate, Severe, Very Severe. It’s worth noting that a ‘Mild’ level of severity may be close to a 50% reduction in functionality – certainly not a ‘mild’ impact for the person living with it. For others who are in the Mild catgory, they may be able to live a fairly normal life if they avoid exceeding their activity limits. Mild Mobile and able to self-care. May be working or attending school, but often with accommodations and by reducing other domestic and social activities. Severe Mostly homebound. Limited activities of daily living (e.g., self-care, showering, dressing). Severe cognitive difficulties. May be wheelchair dependent. Moderate Reduced mobility and restricted activities of daily living. Requires frequent rest periods and typically not working or attending school. Very Severe Bedbound. Unable to carry out most activities of daily living for themselves. Often extreme sensory sensitivity to light, sound, touch, etc. May need total care Quality of Life ME/CFS is a disabling illness that affects daily life. Studies that look at the Health-Related Quality of Life index (HRQoL) consider five dimensions: Mobility Self-care Usual activities Pain/discomfort Anxiety/depression Results of studies for people with ME/CFS confirm a significantly lower quality of life than the population mean and the lowest of all the compared conditions. ME/CFS – 0.47 Depression - 0.62 Multiple Sclerosis – 0.67 Breast Cancer – 0.75 General Population – 0.85 Link https://doi.org/10.1371/journal.pone.0132421 PREVIOUS PAGE NEXT PAGE

Share your voice < Back Associated New Zealand ME Society (ANZMES) Survey 2026 18 Jan 2026 Share your voice ANZMES Survey 2026. “ANZMES is changing. As we transition to a Charitable Trust and look toward the future, we want to ensure our goals align with the reality of what you expect. We are asking for your help to rank our priorities. We would greatly appreciate if you could please take 5–10 minutes to fill out this survey. Your input is important in shaping the future of ANZMES. Responses are due Monday 2nd February 2026 .” ___________________________ This survey includes 10 tick box questions, 2 short answer questions, and space for you to give other feedback. We encourage you to add your voice and provide descriptive feedback in Q.12 to help ANZMES reflect and formulate future planning as the national advisory for ME/CFS. e.g. ✦ What have you been grateful for? ✦ Did you know that ANZMES has developed material for GPs? ✦ How has your GP responded to any ANZMES material that you may have shared? ✦ Are there any improvements that you would like to see to their website? ✦ Have you had any interactions with ANZMES, and if so, how have these been? Find the survey online here Previous Next

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

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

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

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

Dysautonomia often appears invisible, but it has a significant impact on daily life. < 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

The 4th International Conference on ME/CFS, Long Covid and Gulf War Illness < Back ME CFS Canterbury Registered Nurses attend RID2025 11 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

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What is ME/CFS? Myalgic Encephalomyelitis / Chronic Fatigue Syndrome is a serious long-term, complex, multi-system illness. It affects people’s ability to do everyday tasks. Researchers have found that people with ME/CFS have: an abnormal physiological response to activity, altered immune function, impaired energy production, and changes in gut bacteria. People with ME/CFS experience a range of symptoms and these can be worsened by any kind of effort or activity. ME/CFS affects people of all ages, ethnicities, and genders. Conservatively, it is estimated that there are more than 20,000 people affected in New Zealand (4 in 1,000). We estimate that there are at least 2,661 people in Canterbury with ME/CFS, including 362 children and young people. This number will grow as a result of the Covid-19 pandemic. How do I say Myalgic Encephalomyelitis? It helps to break it up into small syllables… My–al-gic En–ceph–a–lo–myel–i-tis Possible Causes The causes and the specific pathologies of ME/CFS are not yet understood – there just hasn’t been enough research done. ME/CFS most often starts after an infectious illness such as glandular fever or Covid-19. Other factors may also be involved for some people: family genetics, environmental toxins, physical trauma (such as a car accident or surgery), and stress (physical, mental or emotional). Some people develop ME/CFS gradually. For others, it develops suddenly after the triggering event. Diagnostic Criteria (IOM 2015) Three primary symptoms are required for diagnosis : Greatly lowered ability to do activities that were usual before the illness: This drop in activity level occurs along with fatigue and must last six months or longer (3 months in children). Worsening of symptoms after physical or mental activity that would not have caused a problem before the illness: This is known as Post-Exertional Malaise (PEM). PEM is often delayed, typically happening 24-48 hours after exertion. Some people describe PEM as feeling like they have the flu. People may be house-bound or even completely bed-bound, especially during PEM. Sleep disturbance: People with ME/CFS do not feel refreshed after a full night’s sleep. At times, people with ME/CFS may have trouble falling asleep or staying asleep, may sleep for over 12 hours a day or need daytime naps, or may have a delayed sleep onset . In addition, at least one of the following symptoms are required : Problems with cognition: Most people with ME/CFS have trouble thinking quickly and concentrating for periods of time compared to prior to illness onset; there may be trouble finding words or slurring of speech, particularly during PEM. Orthostatic Intolerance: This is a worsening of symptoms while standing or sitting upright: This includes feeling lightheaded, dizzy, weak, or faint. There may be vision changes like blurring or seeing spots. GETTING DIAGNOSED Additional Symptoms Other common symptoms : These may be presen t but are not diagnostic. Chronic pain or fibromyalgia Tender lymph nodes in the neck or armpits Digestive issues like nausea, heartburn, diarrhoea, constipation, abdominal pain Muscle pain and aches and rapid muscle tiring Joint pain without swelling or redness Headaches, either new or worsening Nerve pain, felt as stabbing, burning, tingling, pins and needles A sore throat that happens often Chills and night sweats Allergies and sensitivities to foods and medications Sensitivity to chemicals, odours, light, noise, and other sensory inputs Comorbid Conditions It is not uncommon for people with ME/CFS to have other overlapping health conditions, including: Fibromyalgia, Irritable Bowel Syndrome (IBS), Postural Orthostatic Tachycardia Syndrome (POTS), allergies and chemical sensitivities, and Ehlers-Danlos Syndrome (EDS). PREVIOUS PAGE NEXT PAGE