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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 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-m embers and whanau are also welcome to attend. 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 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 Work and Income Advocacy Our advocates support our members to explore what financial support may be available from Work and Income. 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 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 Intervention Fund We operate a small Intervention Support Fund to cover semi-urgent costs that members are unable to manage. READ MORE Advocacy We are involved with advocacy at an organisational level, both regionally and nationally. 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 or gather to do an activity together. Events Calendar You may wish to follow us on Facebook , or join us as a Member , to be notified of our upcoming events. Group Meetings Our group meetings may have an educational, support or social focus for people affected by ME/CFS. These group meetings are an important opportunity to share information and enable connections with other people who understand life with a chronic illness. Non-members are welcome to attend. In 2025, we hope to be holding meetings in Christchurch, Rangiora, Timaru, Westport, Greymouth, Hokitika and Reefton, and also, online. Christchurch In-Person These are held on the last Wednesday of each month from 1pm to 3pm. A highlight for attendees is connecting afterwards from 2pm to 3pm with a cup of tea, and dairy and gluten free refreshments. We meet at the lovely Mary Potter Community Centre in St Albans. See Location Rangiora In-Person These are held on the third Wednesday of every second month from 1pm to 3pm. From 2pm to 3pm we have afternoon together, with dairy and gluten free options. We usually meet in The Skurr Centre, 156 Ashley Street, Rangiora Showgrounds, Rangiora. See Location Online Meeting (Zoom) These are held on the second Wednesday of each month from 12 noon to 1pm. See the event calendar below for more details. These online meetings can be a great option for people who are unable to attend the in-person meetings, for various reasons such as being bed-bound, house-bound, or living outside of Christchurch. Register Online Education for Health Professionals We are able to facilitate and deliver education events for health professionals from time to time. Please get in touch if this is of interest. CONTACT US Event Resources Following each event, we share information and summaries in our newsletter, by email to our members, and also in our Facebook group. This ensures that people who were interested but could not attend the event, can get familiar with the information. If a recording of an educational presentations was made, we share this on our YouTube channel, along with any handouts. GO TO OUR YOUTUBE CHANNEL

Working with your Doctor Building a trusting relationship with your doctor is an important part of any illness management plan. This is especially the case when you have a complex and long-term illness like Myalgic Encephalomyelitis /Chronic Fatigue Syndrome and may also have other comorbidities. ME/CFS can be a challenging illness for doctors. They may not have received any training in ME/CFS, nor be aware of the current clinical guidance. Also, ME/CFS can present differently in each person and there are limited treatments available. This situation can lead to frustration for both the doctor and the patient. An informed GP with a good understanding of your situation, may be able to refer you to other health services and can provide medical evidence for a range of financial supports from Work and Income and information for employers. We have put together some tips that may help you to partner with your doctor, to share the lived experience, and to ensure that the doctor is aware of current and emerging evidence-informed practice. Open our 'Working with your Doctor' handout Clinical Advice for GPs about ME/CFS '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. Ask your health professionals if they have read the ME/CFS topic on HealthPathways recently, as it includes current best-practice clinical advice, based on the IOM 2015 diagnostic criteria and management guidelines from NICE , CDC , Mayo Clinic and ME/CFS expert clinicians. The shorter, public version of the advice can be viewed at www.healthinfo.org.nz/Chronic-fatigue-syndrome-CFS.htm . To encourage your health team to check it out, we have prepared a letter about the ME/CFS HealthPathway . Print this out, or send them the link, or email our office if you would like a copy of the letter posted out to you to take to your next GP appointment. Finding a new GP There are services around the region that can assist you with finding a local General Practitioner and other services. Ask them to recommend a GP who is taking new patients and supports and understands your health conditions: Tautoko Hauora in Canterbury Awawhenua Whanau Services in South Canterbury. West Coast Health for the West Coast. The national www.healthpoint.co.nz website also has a search function to find local and online services. Pegasus Health in Canterbury also provides useful advice about finding Your Best Care | Choose your best health care option . It can be useful talking to other people living with the same health conditions about the health professionals that they have found helpful. My Health Passport My Health Passport is a booklet where you can write down information about how you want people to communicate with you and support you when you receive a health or disability service, including when you visit a medical centre or the hospital. It is not a tool to help doctors diagnose or monitor patients, nor a substitute for a patient’s medical records. But it can be a useful way to get key information across, especially at a time when you may not be cognitively present to communicate well. We have some A5 hard copies which we can provide to members. Please email us to post out to you, or you can pick up at a group meeting. Alternatively, you can download from the Health and Disability Commissioner website. They even have editable pdf versions, which you could edit and then print, or keep on your phone.

Why do we use the Godwit, the Kuaka? Our logo depicts a flying Kuaka, the godwit. These birds show incredible endurance and are recognised for their tenacity and perseverance. Every year, as winter approaches, the Kuaka fly north to the breeding grounds of Alaska, stopping off in Korea and Japan for a rest and some food on the way. On the return journey, as our summer approaches, they fly directly to New Zealand, a trip of endurance with no food, water, or rest; nearly 12,000 km non-stop. The Kuaka fly in flocks, with birds taking turns to lead and conserve their energy in the slipstream of others. Some banded birds have made that journey 20 times and some of them come to the Canterbury coast. The Kuaka arrive back at the Avon Heathcote Estuary every spring. In the face of an enormous challenge, the Kuaka brings a spirit of endurance and cooperation, and that is what makes the Kuaka an appropriate symbol for MECFS Canterbury. Riegan, A. (2011, September 9). Flight path of E7. Science Learning Hub Pokapū Akoranga Pūtaiao The Kuaka have been seen as birds of mystery: there is a saying: ‘Kua kite te kohanga kuaka?’, ‘Who has seen the nest of the kuaka?’. The mystery of course was because the Kuaka makes their nests far away in Alaska. There’s a parallel there with our experience with ME/CFS. The illness is as real as the Kuaka, but no one yet knows what is causing it. Hopefully one day, soon, the answer to the mystery will be as obvious as the location of the Kuaka’s nests is to us now. There’s another evocative saying about the kuaka that can inspire our community: ‘Ka ngau ki te turi kakao te paringa o te tai, e tika te rere o te kuaka’ ‘The spinifex wanders along the beach like the incoming tide, the kuaka flies direct’. The big spiny seed heads of the spinifex plant move along the beach like tumbleweeds, backwards and forwards at the whim of the wind. But the Kuaka make their own way, working with purpose and as a group to achieve something remarkable. Buller, W. L. (1967). Buller’s birds of New Zealand: A new edition of Sir Walter Lawry Buller’s a History of the birds of New Zealand. Whitcombe & Tombs.    It’s said that when Pacific explorers saw the flocks of Kuaka flying so determinedly and seeing that they weren’t sea-birds, they knew that there must be land to the south. So, they set off, following the Kuaka flocks, and discovered Aotearoa. We like to think that the scientists can be like those explorers, following the clues from people with ME/CFS, to make a great medical discovery.

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. 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 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.

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

Buy from us 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 posting out to you.

Advocacy and Networking MECFS Canterbury connects and works with other organisations and individuals to increase awareness of ME/CFS and advocate for better services and research. We collaborate with other organisations such as the national ME/CFS association, ANZMES; Te Whatu Ora Waitaha (formerly the Canterbury District Health Board); and Te Whatu Ora Te Tai o Poutini (formerly West Coast DHB). We are available to present to groups about ME/CFS and appropriate patient-centred care and supports. Please get in touch with us if this would be helpful for your workplace or organisation.

Join us as a member We invite you to join us as a member (it is free): To access our full range of services, To receive our news in your inbox, and to support our work. If you have any questions, please do ask. CONTACT US Please complete our membership form, either: Complete the membership form below, or Print PDF and post

Sponsorship If your business is interested in supporting people living with ME/CFS, we would love to hear from you. There are opportunities to make a difference by sponsoring an event, service area, operational costs and more. First Name Last Name Email Message Thanks for submitting! Send