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Help a friend with ME/CFS If you know someone who lives with ME/CFS, your help and support can make an important difference to their lives. Ask them what would make things easier for them, and what support they would like. Perhaps prepare a meal, provide quiet company, help with housework or maintenance, or pay a bill. If you invite them to an event, consider how to reduce the energy required of them, provide a quiet space to rest, and be aware that they may need to cancel on the day if they are too unwell. Believe them. Learn about their experience and the illness. Remember to manage the support you give around your own needs. Possible next steps: Support your friend to join us so that they can receive our services. FILL OUT OUR MEMBERSHIP FORM Have any questions? Please reach out to us. CONTACT US Guidance for hosting and gifts:

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.

Spectrum of Severity ME is a Spectrum Disorder from MILD to VERY SEVERE. The level of symptoms and severity experienced by each person with ME/CFS is unique and may fluctuate over time. Historically, four general terms are used to categorise the wide spectrum of disease severity and functional impairment seen in ME/CFS. 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. 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

Newsletters In 2024, our newsletter will have been published for 39 years! Currently, there are six issues each year in February, April, June, August, October and December. The newsletter contains updates on the activities of the organisation, information about managing and living with ME/CFS, latest research, plus more. We welcome contributions. Members can elect to receive the newsletter by post and / or by email. VIEW PAST ISSUES SEND US A CONTRIBUTION

< Back New Guidance on ME/CFS for Canterbury GPs 6 Dec 2019 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. MECFS Canterbury is excited to announce that the new CDHB (Canterbury District Health Board – now Te Whatu Ora Waitaha ) HealthPathway for ME/CFS is live - as of Friday, 29th November 2019! We have been working with the CDHB team over the last year on getting the content improved. 'HealthPathways' is a website that GPs log into to view best-practice advice for assessing and managing a wide range of health conditions and concerns. Each region /DHB has their own ‘copy’ of the system content, but the base content is provided by Canterbury. The old 'Chronic Fatigue Syndrome' Pathway has been completely rewritten. The new content is largely based on the information on the US Centers for Disease Control and Prevention site, as this is the most up-to-date and informative of the government sites around the world. (Check out www.cdc.gov/me-cfs/index.html if you haven’t already.) The new ‘Chronic Fatigue’ Pathway will help GPs to assess someone more thoroughly to confirm if they have ME/CFS, idiopathic chronic fatigue or perhaps other conditions that may have different treatment options. It also guides them to support people to manage their activity carefully. 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.” Letter re new CFS HealthPathway .pdf Download PDF • 129KB Previous Next

Our Organisation MECFS Canterbury was originally established in 1985 as a society under the Incorporated Societies Act 1908. The society's goals were to support and assist people with ME/CFS in the management of this debilitating illness and with the aim of improving their quality of life. In 2024, our organisation moved to a Charitable Trust model. The society, M.E. /CFS Group (Canterbury) Inc, was wound up and all services, staff and assets were transferred to ME/CFS Canterbury / West Coast Charitable Trust. We continue to be registered as a charity under number CC32072. We currently trade under the names MECFS Canterbury and ME/CFS Canterbury / West Coast. We have grown over the years to become a professional community health and clinical service organisation, providing a range of services and supports for our community. Visit the How we help page to find out more. We serve people in the Canterbury - Waitaha and West Coast - Te Tai Poutini regions in the South Island - Te Waipounamu of Aotearoa New Zealand. These regions include thirteen District Councils. We also support students at the Southern Regional Health School, who may live in any region of the South Island. Our Strategic Plan For 2023-2028 Determine the cooperation opportunities and geographic range of our organisation Enhance the strength of our governance and organisational framework Reach, support and retain more clients and members Support our supporters: health professionals, funders, volunteers, and others Presentations to our AGMs Our Annual General Meetings are held in November of each year. These meetings provide us with an opportunity to share an overview of our service delivery and finances for the year, and to look towards the year ahead. We invite you to watch the videos of our presentation slides from past AGMs. Annual Performance Statements Our audited Financial and Service Statements provide a detailed view of our finances, outputs and activities. If this is your thing, here they are. 2023 STATEMENTS - Not yet audited 2022 STATEMENTS 2021 STATEMENTS

Testimonials Feedback received from a member in our 2023 Annual Survey “I just feel amazed that the organisation exists. I know that if I have an issue related to CFS that I cannot resolve myself, there is someone I can ask who will understand, and who may know how to get me the help. I also appreciate the kind and social nature of much of the communication; this is a health condition but it affects every domain of our lives, and so the efforts to connect and facilitate care and fun and connection even beyond the healthcare domain feel especially profound. You’d only set up your organisation that way if you understood what weird and indirect impacts this illness can have on your life, so to me the whole thing communicates understanding and an approach of 'you are welcome here'. What a beautiful thing to have when you are dealing with such a complex and overwhelming illness."

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.

< Back Christchurch chronic fatigue sufferer told it was all in her head 6 Dec 2019 Gillian Watson, an MECFS Canterbury member, recently sat down with Oliver Lewis from stuff.co.nz and detailed her experiences with the ME/CFS. Being told to keep pushing was detrimental. Gillian Watson recently sat down with Oliver Lewis from stuff.co.nz and detailed her experiences with the ME/CFS. "I was told it was all in my head so I kept pushing. Which is the worst thing you can do with Chronic fatigue syndrome. I did a degree in chemical engineering so I am, well I was, a smart cookie. I used to deal with complex analytical data in my work. I went from that to barely being able to budget at home." "Chronic fatigue syndrome isn't necessarily a degenerative disease but it can be if you keep pushing. And I believe that I wouldn't necessarily have the degree of difficulty I have with speaking and my mobility issues today if I'd got that message much sooner." Thank you Gillian for sharing some of your story with this debilitating illness. https://www.stuff.co.nz/national/health/117957344/christchurch-chronic-fatigue-sufferer-told-it-was-all-in-her-head Previous Next

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

Our Kaupapa Our Vision – Tā Mātou Aronga That every person with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) in Canterbury and the West Coast lives the best quality of life possible Our Mission – Tā Mātou Whainga To improve the wellbeing of people, families and carers affected by ME/CFS by providing information, validation, clinical support, connection, practical support and advocacy. To improve the quality of care available for those affected by ME/CFS by providing education, direction, and support to health professionals and the wider community. Our Values - Ā Mātou Uaratanga Compassion We show compassion to every person affected by ME/CFS, including family and whānau.  Respect We foster partnerships based on mutual trust, treat every person with dignity and always maintain confidentiality.  Equity We are committed to removing health inequities and barriers.  Patient-centred We support our community with services and information based on evidence and experience, assisting each individual to design supports & management protocols that work for them.   Collaboration We work together constructively and creatively recognising each other's strengths, and those of other organisations, to get the best outcomes for our community.  We acknowledge Te Tiriti o Waitangi as a founding document in New Zealand and demonstrate a commitment and special obligation to its principles.