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#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

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

The main management approach for ME/CFS is reducing your activity to a level that can be sustained and that avoids triggering Post-Exertional Malaise (PEM). We provide some guidance on activity management and pacing here. Activity Management The main management approach for ME/CFS is reducing your activity to a level that can be sustained and that avoids triggering Post-Exertional Malaise (PEM). Post-exertional Malaise (PEM) is a core symptom of ME/CFS and it is an abnormal response to normal activity. It is a disproportionate and prolonged increase in symptoms. PEM makes us sicker and makes it harder to function and participate in our daily life. PEM can be triggered by various kinds of activity - physical, mental, emotional, orthostatic (moving to an upright position), sensory overload, multi-tasking, and physiological processes (temperature regulation, digestion). PEM often occurs hours or days after the triggering activity. Activity management is key to minimising PEM and to stabilising symptom severity. Adopt the ‘Stop, Rest, Pace.’ approach and practice pacing as your commitments allow. We provide more detailed information below. Pacing Pacing helps us avoid triggering PEM. Pacing means adjusting your life to stay within your 'Energy Envelope' as much as possible. Pacing involves: Prioritising what to spend energy on - and choosing which activities to reduce or drop altogether (this may include making life-changing decisions such as reducing employment, retiring, or dropping out of education). Changing the way chosen activities are done so they require less energy (this may include use of mobility aids). Breaking activities down into short bursts. Interspersing activity with rest (physical, cognitive & sensory rest - including rest from screens). Aiming for a balance of necessary activities and pleasurable activities. Creating (usually) safe and energy-efficient routines for regular necessary tasks (this helps reduce cognitive load). Stopping before symptoms increase and taking pre-emptive rest (some patients experience subtle cues when getting close to exceeding their Energy Envelope but many don't so they need to be proactive). Pacing sounds simple but it is not easy to put into practice, and it is individual to you. Be kind to yourself as you cope with daily demands and as you learn about your energy envelope. When exploring what you can manage, it can be useful to keep an 'activity and symptom diary' for a few weeks to see if you can identify any patterns, early warning signs and triggers which could help to reduce PEM episodes. You might find our diary template useful to do this. Wearable Biometric Devices: Some people find using a wearable activity tracker helpful for completing their activity diary, and for keeping steps or heart rate under a certain level. Although a tracker does not measure cognitive or emotional activity, it can help you recognise activities and tasks where your heart is elevated (meaning you are using more energy or under more stress). A good basic activity tracker is the Xiaomi Smart Band and we have some of these available for loan. The Polar H10 HR strap is recommended if you wish to monitor Heart Rate Variability. Further reading: To find out more about pacing, we recommend these resources from Emerge Australia : Introduction to the 'Stop.Rest.Pace ' approach. Two-page Pacing handout which provides a 4-step approach. Five-page handout on Pacing with a Heart Rate Monitor to help determine your anaerobic threshold and energy envelope. ME Support - NZ also has an eight-page Basics of Pacing handout in their Long Covid Support Tool . We also recommend these resources from M.E. Awareness NZ: An Explanation of PEM for people with ME article The Art and Science of Pacing for ME article Articles about Heart Rate Variability: One-page HRV handout from Bateman Horne Centre What is Heart Rate Variability? , Elite HRV Lifehacks for ME/CFS Visit our Lifehacks section for some tips and tricks for managing your daily activities. Practical Supports Visit our Practical Supports section for some other ideas for finding easier ways to do things, so that you can more often live within your energy envelope. Suggestions include using mobility aids and energy saving approaches. Safely exploring exercise When you live with a broken energy system, you need to a pproach exercise as ‘movement’ for your health and wellbeing, rather than ‘exercise’ to improve fitness. We have a few presentations on this topic that you may wish to watch: Safely exploring 'exercise' or movement when you have ME/CFS Rachel Sullivan, Clinical Exercise Physiologist, covers the dangers and recommendations. Analeptic restorative activity in ME/CFS Catherine George, Physiotherapist, explains how to improve functional strength and flexibility. The following organisations provide guidance for safe exercise: Physios for ME (UK-based) Workwell Foundation ( USA)

There are a range of practical supports that may make a difference for you when living with a chronic illness like Look for ways to save energy or to get support with your activities of daily living. Practical Supports There are a range of practical supports that may make a difference for you when living with a chronic illness. Look for ways to save energy or to get support with your activities of daily living. We hope to grow this list over time. Please let us know if you have any suggestions of what could be included in this section. Energy Saving Devices When living with an energy limiting illness, using devices and aids that make everyday tasks easier can make a real difference. Think about the tasks that you can't do without getting sicker, or that you avoid doing, and check out if there is equipment or an aid to make this easier. Some examples of devices and aids that people tell us have made a difference: Dishwasher Robot vacuum cleaner Electric toothbrush Slow cooker Sensory aids such as earplugs, tinted glasses. Find manpower! e.g. someone to mow your lawn or do basic housework once a month. Mobility and Home Aids It is worth considering using mobility aids such as wheelchairs, canes, walkers, shower stools, to help conserve your energy. This is particularly the case if you experience orthostatic intolerance (symptoms when moving to an upright or standing position). Talk to your GP about being referred for an assessment with an Occupational Therapist, or purchase your own. We also have some equipment available to borrow. Mobility Parking Permit People with ME/CFS are often unable to walk much distance or are bed-ridden after an outing. Consider applying for a Mobility Parking Permit so that you can park in the mobility parking spaces outside shops, parks and other locations. It means you don’t have to walk so far during outings and will have more energy for the shopping or whatever you need to do. Please ask your GP or one of our nurses to complete the application form from CCS Disability Action . The cost for a 5-year permit is $50. To help you plan an outing, the Christchurch City Council has a map of where the mobility carparks are. Total Mobility Discounted Transport Scheme People with ME/CFS are entitled to discounts that give them 75% off fares with approved transport operators - up to a maximum of $70 per trip. You can also use the Total Mobility card to get 50% discount on Metro bus fares too. As at June 2024, the Total Mobility scheme is available through the following participating transport operators: Greater Christchurch - Christchurch Mobility Transfers. Blue Star Taxis, Driving Miss Daisy, First Direct, Freedom Companion Driving Services NZ Ltd (ChCh North and Rolleston), Gold Band Taxis, NZ Total Care Mobility Ltd Ashburton - Ashburton Taxis Timaru - Geraldine Community Minibus Trust, Timaru Taxis, Driving Miss Daisy Waimate - Waimate Community Vehicle Trust Some operators not only provide transport but can also be booked to support you at appointments and events. We understand that the drivers from Total Care Mobility and Driving Miss Daisy can offer this companionship support. Applications can be made through Aspire Canterbury ($34 per annum) or talk with one of our nurses to apply through Aged Concern (one off $30 fee). Your GP or one of our nurses can sign the application form. For more info, see: Environment Canterbury Total Mobility Scheme . Total Mobility on Metro buses in Christchurch and Timaru. Online Grocery Shopping You might find that it is worth taking the time to get familiar with ordering groceries online so that they are delivered to your home or made ready for pickup at the supermarket. It saves a lot of energy and may help you to manage the rest of your week. For more information about the services and costs of online shopping see the up-to-date information from the stores: Woolworths - Pickup or Delivery Pak'nSave - Pickup only New World - Click and Collect or Delivery Fresh Choice - Pickup or Delivery at selected stores Hāpai Access Card This card is for the disabled community and it's aim is to provide the cardholder with empathetic customer service from businesses, cafes and attractions involved with the programme. Your card will indicate what barriers you may face when engaging with the community. For example, it may indicate that you cannot stand in a queue, so when you show your card they will invite you to the front. The card also provides discounts in some retail and council settings. The Hāpai Access Card costs $45+GST for 3 years. They also sell a branded lanyard with a strong plastic display wallet for your card for $5 + GST and shipping. You can self-refer for the card and will need to provide evidence of your needs. Our Registered Nurse Service can also complete an application for you. Waka Ora Health Shuttle The Waka Ora Health Shuttle is a koha (donation) based community service, delivered by volunteers, that transports people to health and wellbeing related appointments, and then brings them home again. The service is coordinated by Hato Hone St John. Pick up is generally from your home (or a nearby meeting point), although the service offered varies by area. In our region, the Health Shuttle operates in Aoraki, Ashburton, Christchurch, Kawatiri, Morth Canterbury and West Coast. To find out more, visit Hato Hone St John . Hidden Disabilities Sunflower Lanyard The sunflower is a globally recognised symbol for non-visible disabilities. Wearing a sunflower lanyard lets airport staff know that you may need a little extra help or understanding when travelling. Other businesses, such as ASB, recognise the lanyard. Please bear in mind that a sunflower lanyard will not get you through queues faster or provide a personal escort or wheelchair through airports. Talk to your airline about special assistance or the use of a wheelchair while at the airport. The Sunflower Lanyard Facilities at Christchurch Airport include lower sensory bathrooms, information desks, a quiet pod, and a quiet seating area. We normally have supplies of the Sunflower Lanyards provided by Christchurch Airport or you can order directly from them. MedicAlert bracelet If you have a health condition that may result in emergency care, you may wish to consider purchasing a bracelet from the MedicAlert Foundation . The bracelet is engraved with your personal medical ID and your highest risk information to assist first responders. Responders can then use the ID to access additional information about you through the 24/7 emergency hotline service.

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

Donate We rely on grants and donations to fund our services because we do not currently receive any funding from the government's Health budget. Every dollar donated helps us to employ a skeleton part-time team and cover our operational costs. A one-off or regular donation helps us cover these example costs: $5 Posting our newsletter to a client who finds it easier to read a paper copy. $17 Monthly phone plan for one of our staff to call their clients. $20 Reimbursing staff for travel costs to visit one of their clients. $40 Purchasing a new book for our library. $60 Supporting a client to access benefits and other payments from Work and Income. $100 Venue hire and refreshments for one of our group meetings around the region. $250 Initial visit to a client by one of our Nurses, to explore diagnosis and symptom management, and to complete follow up referrals and a management plan. $400 Delivering an education session for health professionals or another organisation. $500 Supporting a student to remain at the Southern Health School for a year. $1800 Rent and utilities for our office for a month. Ways to Donate Internet Banking Donate directly to our bank account Westpac 03-0802-0060232-000 Our legal name is 'ME/CFS Canterbury / West Coast Charitable Trust' Please use our Donation form to let us know you have done so. This enables us to send you a donation tax receipt and to say thanks! DONATION FORM Debit or Credit Card We can also accept payment by Debit or Credit Card, and Google Pay. Use our Donation Form to access these payment options using our Stripe online payment facility. DONATION FORM Givealittle The Givealittle website enables donations to be made by credit card, internet banking, or Givealittle wallet. You choose the amount and the frequency (one-off, monthly, fortnightly, or weekly). You can also select whether your name or ‘guest donor’ appears against the donation. GIVEALITTLE WEBSITE Payroll Giving If you are wanting to make a regular donation, however small, the Payroll Giving facility is available to employees to make a donation through your employer’s payroll system. Donations made via Payroll Giving receive an immediate PAYE credit of 33% of the donation amount. This avoids the need for charities to generate Donation Tax Receipts and for the donor to collect and submit Donation Tax Receipts to the Inland Revenue Department. Talk to your employer to enter this scheme, or visit to https://www.ird.govt.nz/roles/employees/payroll-giving-as-an-employee find out more. You will need these details: Organisation Name with IRD is ‘ME/CFS Canterbury / West Coast Charitable Trust’ Charity registration number is CC32072. We have a bank account with Westpac 03-0802-0060232-000 Your employer will pass the donation to us, and let us know it is from Payroll Giving. Please let us know if you set Payroll Giving up, as we would appreciate the opportunity to say thanks. CONTACT US Donate Items We welcome donations of items for our use or for our book and equipment library, and also welcome items for resale on our Trade Me account. ENQUIRE ABOUT DONATING ITEMS

Your feedback shapes what we do... < Back 2026 Annual Survey – Open Now 23 Jun 2026 Your feedback shapes what we do... Each year we ask our community how we're doing and what would make a difference. This is that. The survey has six optional questions and takes between three and ten minutes, depending on how much you have to say. All questions are optional, answer one or answer all of them. Your feedback helps us to prioritise how we use our limited resources and gives us something concrete to share with funders and supporters. We want to hear what has worked, what hasn't, and what would actually help. Both positive experiences and honest critique are useful to us. All responses are anonymous unless you choose to share your details. ✦ Survey closes: Thursday 16 July 2026 ✦ Take the survey here Ngā mihi, Rose, Greta, Siju, Karen, Tom, and Ruth The Board of ME/CFS Canterbury / West Coast Charitable Trust Previous Next

When considering what supplements and treatments might be beneficial, we can refer to expert ME/CFS clinicians around the world and anecdotal evidence from the ME/CFS community, along with what published research there is. But care must be taken to always consider the individual, the risk of harm, and to approach any new treatment safely. We offer some guidelines for this. Supplements and Treatments In a perfect world, it would be understood what each of our bodies need to enable improvement and recovery. In this future world, there will be duplicated, published peer-reviewed clinical trials to back up any treatment recommendations that might be made. There would also be medical professionals who are knowledgeable in assessing each person's health and who have the expertise to manage symptoms and monitor treatments. We certainly aren’t there yet. Right now, when considering what supplements and treatments might be beneficial, we can refer to expert ME/CFS clinicians around the world and anecdotal evidence from the ME/CFS community, along with what published research there is. But care must be taken to always consider the individual, the risk of harm, and to approach any new treatment safely. We offer some guidelines for this below. 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. What Lived Experience Tells Us From decades of people with ME/CFS and their doctors sharing what may help, we can make these points: Pacing our activity and energy expenditure, and including rest periods in each day, seems to be the best treatment protocol to manage symptoms and improve quality of life. Managing stress and calming the parasympathetic system through relaxation therapies often helps. People often report a supplement may be helpful for a period of time, but then it loses its impact. That initial period of respite may still be of high value. Stopping and then starting again may restart effectiveness. Supplements and therapies can cost a lot – at a time when we are likely to have limited financial resources. Given many treatments do not have evidence to support their use, will not work for every individual, or not for long, it can be difficult justifying investing in them. Purchasing a mobility aid or hiring a cleaner to help pacing, may achieve more. It is likely that there are subtypes of ME/CFS, and these may require different treatment pathways. People are often diagnosed with ME/CFS when a differential diagnosis or comorbid condition should have been identified. e.g. EDS, MS. The Risk of Harm Some supplements, treatments and therapies can DO HARM: While “natural” medicines and conventional pharmaceuticals can be helpful, they can also be contraindicated or dangerous if you have other diagnoses or are on other medication. Examples: Did you know that anecdotally, even basic supplements like magnesium, vitamin D and C can have negative health effects? Did you know that an estimated 1 in 250 people in NZ are at risk of developing hereditary haemochromatosis (toxic iron overload) so should never take iron supplements? People with ME/CFS can be very sensitive to supplements and vitamins, so their response cannot be assumed or judged from the experience of others with ME/CFS, or the general public. Fillers in supplements (as an example, mag stearate) can affect people with ME/CFS badly. Stimulants may seem an intuitive choice, but they frequently backfire in ME/CFS, leading to a very brief boost followed by a crash. Some Neuro-linguistic programming (NLP) therapies encourage people to exceed their energy envelope and risk pushing people with ME/CFS into a more severe symptom level. Graded Exercise Therapy (GET) is contraindicated, and is harmful when exercise is increased and triggers PEM.. Guidelines for Introducing Something New We recommend that you consult with your GP before starting new treatments. Add only one supplement change at a time, so that it is easier to verify what is helping or not. Start supplements on extremely low doses, because many people with ME/CFS are hypersensitive. Stop supplements/treatment if any negative reactions/symptoms are experienced (please check with your GP if this needs to be done gradually) Monitor the use of supplements extremely carefully. Keep a journal prior to starting – it is so easy to miss or over-inflate impacts. Trial for 2 – 3 months. If unsure whether it is helping, stop for a period (in a way that is safe to do) and monitor any changes. Start Low. Go Slow. Keep a record. Potential Supplements and Medications This is a list of potential supplements that some ME/CFS patients can tolerate and have sometimes found helpful. Unfortunately, this does not mean they will be good or helpful for you. PLEASE talk to your doctor and refer to the risks and approach guidelines above before trailing. Vitamin D - for those housebound and don’t get enough sun, preferably after a vitamin D test. Magnesium malate - in evening for insomnia, but some forms can disturb sleep and bowels. Lypospheric Vitamin C or the cheaper standard Vitamin C - for immune support. Vitamin B12 and B multi - for brain fog and fatigue (supplements are considered less effective than injections). Refer to our B12 information leaflet . Electrolytes – for those with Orthostatic Intolerance symptoms. Extra salt can be a good alternative, unless you have high blood pressure. Your GP can prescribe Electral. Gut health tonic - for digestive issues. Iron - only when deficiency has been confirmed by a blood test. Co-Q10 - some people have found this effective for mitochondrial support. NAC (N-acetylecysteine) – enhances mitochondrial support. Antihistamines – particularly if signs of MCAS, Mast Cell Activation Syndrome. Melatonin slow release – for sleep support. Horopito therapeutics - for systemic Candida. Low Dose Naltrexone (LDN) – evidence for pain support, emerging evidence for fatigue support. Used 'off-label' in New Zealand. Refer to our LDN leaflet . Evening primrose oil - may be helpful in relieving joint pain. Mestinon (pyridostigmine bromide) - emerging evidence for supporting aerobic capacity, fatigue, muscle strength and mental clarity. Used 'off-label' in New Zealand. Refer to our Mestinon leaflet . Refer to our further reading list for more information about these recommendations. Potential Therapies This is a list of potential therapies that some ME/CFS patients have found helpful. Unfortunately, this does not mean they will be good or helpful for you. PLEASE talk to your health team and refer to the risks and safe approaches suggested in our guidelines above before trailing. Vagus Nerve Stimulation (VNS ) - calming the Sympathetic Nervous System (SNS), the fight /flight response in the Autonomic Nervous System (ANS). Breathing Techniques such as 4-7-8 breath - for calming your ANS. Also see our Mental Wellbeing section for relaxation therapies. Further Reading Clinical Care Guide from Bateman Horne Centre, USA, a 98 page document published 2025. Clinical Primer from IACFSME (International [Clinician] Association for CFS/ME), 2014. Particularly Section 5 Management and Treatment. List (crowd-sourced) of supplements & considerations for pwME including what research exists https://me-pedia.org/wiki/MEpedia:Contents#Herbs.2C_supplements_and_nutraceuticals Statement from M.E. Awareness NZ on alternative medicine and therapy programmes https://m.e.awareness.nz/position-statements Advice from ME Association UK, who are strongly evidence-based. They provide general guidance and leaflets covering various supplements, therapies and medications https://meassociation.org.uk/free-literature-downloads/ There are supplement recommendations in Dr Sarah Myhill’s book about ME, “It’s Mitochondria not hypochondria” (we have a copy in our library). Again, no researched evidence on these, just anecdotal evidence. Visit our Links page for more information.

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

Blue Sunday, created by Anna Redshaw, is a special day where people come together over a cuppa and some cake to raise awareness and funds for those living with ME/CFS. < Back Blue Sunday - The Tea Party for ME 12 Apr 2026 Blue Sunday, created by Anna Redshaw, is a special day where people come together over a cuppa and some cake to raise awareness and funds for those living with ME/CFS. We invite you to take part in the Tea Party for ME on Sunday, 17 th May 2026. It's an opportunity to feel part of a movement: knowing that others are drinking tea (or whatever) and collectively thinking of you and all those living with ME/CFS. Blue Sunday, created by Anna Redshaw, is a special day where people come together over a cuppa and some cake to raise awareness and funds for those living with ME/CFS. Yes, you can do this quietly in your own home or just go out for coffee wearing something blue. It can also be an opportunity to help raise funds for us, but this is optional. Since 2013, Blue Sunday has raised over £100,000 (est. NZD$266,000) for ME/CFS organisations across the world. Get involved by doing one or more of the following (or version of): Host a tea party at your home, workplace, community group, or even online! Wear something blue - PJ’s or blue nail polish counts! Enjoy a cup of tea (or coffee) and a slice of cake somewhere. Take some photos of your tea party and share on social media with the hashtags #BlueSunday #MECFSCanterbury and tag us @mecfscanterburyinc on facebook and @mecfs_canterbury on instagram. We would love to see your photos! Or email us and we will share. Or share in our Facebook Group . Ask guests and absent whānau to donate the price they’d pay at a cafe to support ME/CFS Canterbury / West Coast: www.mecfscanterbury.nz/donate . ME/CFS themed blug mugs can be purchased on our Crash Wear store. For more info and resources, visit: the-slow-lane.com/blue-sunday-2026 the-slow-lane.com/2020/02/13/what-have-tea-and-cake-got-to-do-with-m-e Image below of Anna Redshaw wearing blue at a blue-themed tea party for Blue Sunday. Previous Next

Our Health Partners Since 2019, we have met regularly with managers at Te Whatu Ora (formerly CDHB, Canterbury District Health Board) to raise awareness of ME/CFS, discuss our services, develop educational opportunities for health professionals, and ensure that people with ME/CFS have access to standard services from the health sector when entry criteria is met. We have worked with the clinical editors of the HealthPathways, Allied Healthways and HealthInfo websites during this time to provide evidence-based information for medical professionals, allied health professionals and the public. As a result of our education programme and partnership with Te Whatu Ora - Waitaha (Health New Zealand - Canterbury), we have observed that more General Practitioners are comfortable assessing, diagnosing, and supporting people with ME/CFS. HealthPathways HealthPathways is a website that offers clinicians locally agreed information to make the right decisions together with patients, at the point of care. The guidance for ME/CFS is based on the IOM 2015 diagnostic criteria promoted by the CDC. Let your GP know that there is clinical guidance for ME/CFS on Health Pathways or give them a copy of our letter about it. HealthInfo HealthInfo is a health information website for the general public in parts of the South Island. The website has a mix of health information, including factsheets on different topics and descriptions of local health services and support organisations. It also has links to recommended websites for further reading and research. The information about ME/CFS on HealthInfo can be found here . Allied Healthways The Allied Healthways website provides guidance for allied health professionals such as physiotherapists, occupational therapists, pharmacists and psychologists. Pathways provide clear and concise guidance for assessing and managing a patient with a particular symptom or condition. Information about ME/CFS is included in the PhysioFITT programme and Chronic Fatigue topics. Our Funding Partners What we do is only made possible by the community trusts, gaming trusts, government agencies and individuals who have contributed financially over recent years to the operation of MECFS Canterbury. Please accept our gratitude for helping us to make a difference for our local ME/CFS community. Air Rescue Community Services COGS - Community Organisation Grants - Christchurch The Jansen Trust Mainland Foundation Rano Community Trust The Trust Community Foundation Aotearoa Gaming Trust COGS - Community Organisation Grants - West Coast Kiwi Gaming Foundation NZ Community Trust Rata Foundation Trillian Trust Christchurch Casino David Ellison Charitable Trust The Lion Foundation One Foundation Riccarton Rotary Trust Aoraki Christchurch City Council - Strengthening Commuunities Grant Grassroots Trust Lotteries Community Canterbury Pub Charity Roy Owen Dixey Trust West Coast Community Trust And individuals who support us with private donations Our Business Partners We are grateful to the companies who support us with discounted software or services.

We invite you to watch Nurse Wendy Dragt’s talk about Orthostatic Intolerance (OI) and its Management – now available on our youtube channel < Back Orthostatic Intolerance and its management Presentation 1 Sept 2025 We invite you to watch Nurse Wendy Dragt’s talk about Orthostatic Intolerance (OI) and its Management – now available on our youtube channel We invite you to watch Nurse Wendy Dragt’s talk about Orthostatic Intolerance (OI) and its Management – now available on our youtube channel https://youtu.be/HSj8zcK7XK0 OI is a common symptom in # MECFS, Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. There are various types including #POTS (Postural Orthostatic Tachycardia Syndrome), #NMH (Neurally Mediated Hypotension) and low Orthostatic Intolerance. This presentation covers: ✦ Definition and background ✦ Patho physiology – what’s going on? ✦ Diagnosis ✦ Management ✦ Resources This recording provides useful information for people with ME/CFS, POTS, or NMH, their health team, and whānau. At 62 minutes long, you may need to take some breaks and watch it over a couple of sessions. Expand the description for the video on YouTube to access the pdf of the slide deck and a timestamped list of the slides, plus more. ___________________________ DISCLAIMER: Please note that ME/CFS Canterbury / West Coast does not recommend any treatments for any individual. 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. ME/CFS Canterbury / West Coast is not responsible for the accuracy of content that we link to. The inclusion of such links does not imply endorsement by ME/CFS Canterbury / West Coast. Previous Next