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

Ways to Help The generosity of the wider community enables MECFS Canterbury to provide our services. We welcome all sorts of contributions whether it be specific expertise, practical help, or donations of money and goods. We currently do not receive any income from government health funds. We are grateful for your interest in our organisation and assure you that any contribution makes an important impact. Help a friend with ME/CFS READ MORE Volunteer READ MORE Donate READ MORE Support our Impact READ MORE Fundraise READ MORE Buy from us READ MORE Support business in our community READ MORE Bequest READ MORE Sponsorship READ MORE

Meet our Team Governance Board Rose Camp Chairperson Rose joined the MECFS Canterbury committee in 2019, with a focus on improving how people with ME/CFS are treated by the health system. Both Rose and a family member have ME/CFS, and she is currently unable to work consistent regular hours because of it. Rose has a background in software development (as a tester), and in charity administration. Greta Bond Secretary Greta joined our Board in September 2025, and brings experience as CEO of Aged Concern Canterbury and a previous project specialist role with the Canterbury District Health Board. She became Secretary of the Board in February 2026. Siju Thomas Treasurer Siju kindly joined our committee in February 2024, to help us monitor our cashflow and grants pipeline, and to participate in governance discussions. Siju brings experience in financial management overseas and is a semi-qualified Chartered Accountant. Karen Lawton Karen joined the MECFS Canterbury committee in February 2022, as a consequence of having a family member who lives with ME/CFS and its impacts. Karen has experience in writing applications for government funding for companies, in sponsorship and funding for various regional and national photographic events, and as registrar for the NZ Acupuncture Standards Authority. Her main focus for our organisation is to ensure that the organisation attracts grants to sustain and grow the support needed by our local ME/CFS community. Tom Harris Tom joined MECFS Canterbury and the Committee in April 2022. He has had CFS on and off for about 8 years. Tom trained as a psychology researcher, is an experienced muscian, and runs an AI Education company. He is an avid follower of new ME/CFS research (which he blogs about) and contributes to the quality of our written material and awareness raising activities. Ruth Keating Ruth joined our Board in January 2025, and brings experience as a lawyer working in NZ, London and Melbourne in both large firms and most recently in house as a General Manager. Ruth has a rare auto immune condition and has lived experience with Chronic Fatigue, and has had to stop working. Since 2022 she has been solely focusing on furthering her Governance career in Not for Profit entities. She is a Chartered Member of the NZ Institute of Directors. Sarah Bennett Sarah joined the MECFS Canterbury Board in 2026. She has extensive leadership experience across health and public-service settings, with particular experience in service improvement, organisational change and staff development. Through people close to her who live with ME/CFS and Long COVID, Sarah has seen the significant impact these illnesses can have on individuals and whānau. She is committed to supporting effective advocacy, greater understanding and sustainable services for the ME/CFS community. Roslyn Kerr Roslyn joined our Board in 2026. She has many years of governance experience, mainly in sport and the environment. Her day job involves supporting environmental groups in the Parks Unit at Christchurch City Council. She is keen to support the board with sponsorship and grant writing. Roslyn has had several people in her life who have been heavily affected by ME/CFS. Geraldine Henderson Geraldine joined the Board in July 2026. She has qualifications in microbiology, economics and public health and currently works for Health New Zealand managing two national clinical networks. In late 2025, Geraldine returned to Christchurch from London where she worked as an NHS commissioner for long covid services in North Central London. Advisors Jan Barber, Board Advisor Jan is a Clinical Pharmacist by training but since 1997 worked in various roles in the New Zealand health system, including the Health Funding Authority, General Practice Organisations and Regional District Health Board organisations. From 2011 until May 2017, she was employed by the five South Island DHBs as the General Manager of the South Island Alliance Programme Office (SIAPO). Jan also has a history of governance experience for netball charities. Jan joined our committee in Feb 2021 and made significant contributions around strategy, governance processes and recruitment. In January 2025 she resigned from our Board, but continues to provide valuable support. Richard Everts, Medical Advisor Dr Richard Everts is a hospital and community Infectious Disease Specialist and Medical Microbiologist based in Nelson who has maintained an active clinical interest in Chronic Fatigue Syndrome for 30 years. In 2025, Richard retired from seeing ME/CFS patients. In 2026, he kindly accepted the opportunity to put his experience and knowledge to use as a Medical Advisor for MECFS Canterbury. The main goal of this role is to provide senior clinical support and encouragement for our nurses, alongside reviewing our handouts and material and supporting funding applications and education activities. Please note that Dr Everts is not available for individual client appointments. Operations Staff Rose Acting Manager Rose has stepped in as Acting Manager until we have worked secured funding for a part time Manager. Rose has responsibility for developing appropriate services, building our team of employees and volunteers, and networking with other service providers. Amanda Registered Nurse Lead Amanda joined our team in January 2023 in a part-time Registered Nurse role. In May 2026, she stepped into a new Lead position to provide senior guidance and management of our Registered Nurse Servce. Amanda continues to work one-on-one with clients alongside this role. Wendy Registered Nurse Wendy joined our team in March 2024 in a part-time role. She has a community nursing background and spent most of her working life in South Auckland. She has personal experience of ME/CFS having a close family member who lives with it. Dominique Registered Nurse Dominique joined our nursing team in June 2026 in a part-time role. She brings experience in both hospital and community settings, and of ME/CFS and Ehlers Danlos Syndrome. Florence Work and Income Advocate Florence joined us in 2026 as a Work and Income Advocate. Florence supports people to explore their eligibility for the financial benefits and allowances available from Work and Income and to apply for and maintain these. Mell Office Administrator Mell joined us as volunteer Office Administrator in April 2025 to support our team. Mell became a part-time employee in October 2025. She responds to email and phone queries, looks after our library, helps prepare documentation, plus a wide range of other tasks. Angela Local Facilitator - South Anglea started with us in 2025 to facilitate our meetings in Timaru. She is a Social Worker and mindfulness facilitator. In 2026, she became part of our core team and now has a wider role to connect our members to each other and to local services that provide social, emotional and practical support. Hannah Accounts Administrator Hannah joined us in May 2021 to be our part time volunteer Office Administrator, later moving to an employed capacity. In January 2023, she changed focus to the Accounts Administrator role and now looks after our day-to-day financial accounts. She manages these tasks while living with ME/CFS and POTS. Tamara Social Media Coordinator Tamara joined us in this volunteer role in December 2024. Tamara posts content on our social media channels to raise awareness of ME/CFS, our services and guidance for living with ME/CFS and related conditions. Desiree North Canterbury Support Desiree has been a volunteer with us since March 2024 in a Client Outreach and Support role. She helps connect people in our ME/CFS community with others and the wider community. She also provides assistance for working through a next step, developing a special interest, or just catching up with a friendly call. Desiree also helps facilitate our group meetings in Rangiora.. Jordan Christchurch Support Jordan began volunteering with us in the Client Outreach and Supports role for Christchurch in July 2025. She has a BSci in Genetics and is currenlty doing a Masters in Nursing. Jordan is available to provide assistance for working through a next step, developing a special interest, or just catching up with a friendly call or visit. Rissa South Canterbury Support Rissa has provided advice around Work and Income benefits and allowances on a volunteer part time basis for us since February 2022. In the end of 2023, she moved to Waimate and is providing local one-on-one support and assisting with our meetings in Timaru for people with ME/CFS. Vacant Mid Canterbury Support We are looking for a volunteer to be our Client Outreach and Support in Mid Canterbury. This position helps connect people in our ME/CFS community with others and the wider community. The volunteer also provides assistance for working through a next step, developing a special interest, or just catching up with a friendly call or visit. They may also help facilitate our group meetings in the area e.g. in Ashburton. Vacant West Coast Support We are looking for volunteers to be our Client Outreach and Supports on the West Coast. This position helps connect people in our ME/CFS community with others and the wider community. The volunteer also provides assistance for working through a next step, developing a special interest, or just catching up with a friendly call or visit. They may also help facilitate our group meetings in the area. e.g. Westport, Greymouth, Hokitika, Reefton. Vacant Volunteer Coordinator We are currently recruiting for a Coordinator for our Volunteer Outreach Service. This is an important role and involves onboarding volunteers and matching these to clients who need practical or friendly support. Vacant Sponsorship Lead We are currently recruiting for a part time volunteer Sponsorship Lead. This role includes developing sponsorship opportunities and building relationships with companies who may be in a position to support our services for our chronically ill community. Andy Video Editor Andy joined us in November 2024 as a volunteer. He edits the recordings from our educational sessions so that we can share these on our YouTube channel. Jill Afternoon Tea Host Jill joined us in April 2022 as a volunteer. She home bakes delicious gluten free and dairy free treats for our afternoon teas at our group meetings. Stéphanie Seller of Donated Goods Stéphanie joined us in December 2022 as a volunteer to sell items that are donated to us on Trade Me. She manages the listings and sales interactions, and helps us increase our income. Volunteers We have a remarkable team of volunteers who contribute to our organisation or support people one-on-one. Some help with one-off projects and others help on a regular basis. Their support makes a real difference to the lives of the people in our ME/CFS community. FIND OUT MORE ABOUT VOLUNTEERING

Feeling creative and got some extra spoons? Turn them into something that speaks for our community with our Crash Wear Design Competition. We’re looking for ME/CFS or Long Covid themed designs for our Crash Wear merch, something that captures the lived experience of ME/CFS and Long Covid. < Back The 2026 Crash Wear Design Competition 11 Apr 2026 Feeling creative and got some extra spoons? Turn them into something that speaks for our community with our Crash Wear Design Competition. We’re looking for ME/CFS or Long Covid themed designs for our Crash Wear merch, something that captures the lived experience of ME/CFS and Long Covid. Three winning designs will be featured on ME/CFS Canterbury “Crash wear” merchandise and the winners will receive one crash wear item of their choosing featuring their design. Entries close Saturday, 31st May 2026, and winners will be announced on Friday 12th June 2026. Check out the current Crash Wear range at https://mecfscanterbury.digitees.co.nz Conditions of Entry Eligibility: Entry is open to members, caregivers, and family/whānau of people living with ME/CFS or Long COVID in the Canterbury and West Coast regions. Entry Period: Entries open upon announcement and close at 11:59pm, 31 May 2026 (NZST) Number of Entries: You may submit as many designs as your energy allows, no pressure to overdo it. Original Work: All submissions must be the entrant’s original work and must not infringe on any copyright, trademark, or intellectual property rights. Design Requirements: Designs should reflect themes relevant to ME/CFS and/or Long COVID. Artwork must be suitable for printing on merchandise e.g. clothing, accessories. Colours do not need to be limited to the existing colour palette of our Crash Wear (blue and white). Final files may be requested in a high-resolution format if shortlisted. We will also accept draft entries from people who have a good idea but not the skills or tools to create high quality art. If your design is the winner, we can arrange for the artwork to be done. Use of Entries: ME/CFS Canterbury may display submitted designs (with credit) on social media for promotional purposes related to the competition, unless the entrant requests otherwise. Selection of Winners: Entries will be reviewed and three winning designs selected by a panel of ME/CFS Canterbury staff, volunteers, and members. W inners will be announced on Friday 12th June 2026 on https://www.mecfscanterbury.nz/news-1 and by email. Prize: The three winning designs will be featured on ME/CFS Canterbury “Crash wear” merchandise and the winners will receive one crash wear item of their choosing featuring their design. The item of clothing or accessory can be selected from the range available from Digitees. View the selection at https://www.digitees.co.nz/create. Artist Credit & Rights: Artists will be credited wherever reasonably possible. If your design is selected as a winner, the rights to the design are transferred to ME/CFS Canterbury for use in promotional, fundraising, and merchandising purposes. Content Guidelines: Designs must not include offensive, discriminatory, or inappropriate material. ME/CFS Canterbury reserves the right to exclude any entry that does not align with its values. Changes & Decisions: ME/CFS Canterbury reserves the right to amend these conditions or cancel the competition if necessary. All decisions are final, and no correspondence will be entered into. Submit Your Entry Submit here Feel free to email us on info@mecfscanterbury.nz if you have any questions. Previous Next

Registered Nurse Service Our Registered Nurses provide a range of clinical supports for our members and their whanau. A Nurse can also talk to your health team, education provider and workplace, to improve understanding and to discuss care and accommodations. The Registered Nurse Service is free and is delivered through home visits, zoom consultations, and other interactions to people of all ages. An initial assessment involves discussing your previous medical history, your current situation and what ongoing supports you may need. Areas of support may include: Clinical support for symptom management and obtaining a diagnosis. Short term loan of a wearable activity tracker, to help monitor the impact of your activity on your symptoms, and to assist you to pace within your energy envelope. Advocacy with GP’s, Physicians, allied health, employers, education providers, whānau and others. Management plans for students attending the Southern Regional Health School. (SRHS is a state school for children in Years 1 to 13 who are unwell.) Referrals to allied health and other external supportive services (including CDHB Occupational Therapy, CDHB LTS-CHC (Long Term Support – Chronic Health Conditions), Pegasus Health PCW (Partnership Community Workers), Comcare – Peer Support, Total Mobility Card) Applications for the Hāpai Access Card which give people with disabilities better access and support from retailers and public areas. Due to funding constraints, our Registered Nurse Service is only available to people who have or suspect they have ME/CFS or Long Covid in the Canterbury and West Coast regions. The exception to this is for young people from throughout the South Island who attend the Southern Regional Health School. Please note that there is currently a waiting list for our Registered Nurse Service and you may need to wait for several months before receiving first contact from a nurse. We apologise for this and assure you that we are working hard to increase the funding for our services. To access this service: To refer yourself to the Registered Nurse Service, sign up as a member and note on the form what help would be beneficial, and one of our team will be in touch. Existing members can email us to request a referral to the Registered Nurse Service. FILL OUT OUR MEMBERSHIP FORM OR ASK YOUR GP TO FILL OUT THE REFERRAL FORM Our Registered Nurse team is also available to provide general information about ME/CFS to medical professionals and community-based service providers.

Online Community We invite people affected by ME/CFS and Long COVID throughout the South Island to join our peer support group on Facebook to share information and experiences, and to support each other. We welcome both formal members of MECFS Canterbury and non-members to join the community there. You will be asked several questions prior to joining, including your commitment to adhering to our Rules for the Facebook Group – we want to provide a safe place for everyone in our regional ME/CFS community. We also host a Facebook group for those who live on the West Coast, to help facilitate local connections, information sharing, and social catchups. JOIN THE SOUTH ISLAND ONLINE COMMUNITY JOIN THE WEST COAST ONLINE COMMUNITY

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. 2025 STATEMENTS 2024 STATEMENTS 2023 STATEMENTS 2022 STATEMENTS 2021 STATEMENTS

Dysautonomia often appears invisible, but it has a significant impact on daily life. < Back October is Dysautonomia Awareness Month 9 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

Bequest A gift of any size in your Will, can increase quality of life for many people affected by ME/CFS and Long Covid. MECFS Canterbury recommends talking to a solicitor to write or update your Will. They will require our registered charity number to ensure your gift goes to the right place. Before getting in touch with them, you could start thinking about how you would like to give. You may want to consider giving a: Residual gift After providing for your family and loved ones, you can gift the remainder of your estate, or part of it, to MECFS Canterbury. Percentage You could divide your estate between a number of people and charitable organisations by allocating a percentage to each one. Specific gift This could be a specific sum, jewellery, real estate, shares or anything else you possess. You will also need this information: Our registered address is MECFS Canterbury, PO Box 10090, Phillipstown, Christchurch 8145. Our registered charity number is CC57086. If you would like any further information, or if you would like to talk to our Manager in confidence, please call 020 4091 9153, or email info@mecfscanterbury.nz . Please let us know of your intentions It would be very helpful for us if you let us know your intentions. Leaving a gift to us means a lot and we would like to be able to thank you for this. CONTACT US On behalf of our ME/CFS community, thank you for your consideration.

Volunteer Our volunteer team makes a huge difference to the support and services that we can offer people impacted by ME/CFS. We have volunteers who visit clients to provide practical supports such as housework and gardening tasks, walking dogs, assisting with filling forms and IT issues. Other people write articles for our newsletter or assist with our events and services in other ways. To sign up as a volunteer: We often have specific vacancies listed on the Volunteer Canterbury website for you to browse through. VIEW OUR VOLUNTEER VACANCIES ON VOLCAN Alternatively, please fill out our ‘Volunteer Expression of Interest’ form. We will be able to match you with people in need based on your location and the tasks you are willing to help with. FILL OUT OUR VOLUNTEER FORM For existing volunteers: After each client visit, please use the Outreach Event Form linked to below, to let us know what support was provided and when. There is also space to indicate future plans and to provide feedback. Remember to bookmark the website address so it can be found easily after each visit. Thank you for being involved in such a practical way with our community! COMPLETE OUTREACH EVENT FORM

We are excited to announce the three winners of our 2026 Crash Wear Merch Design Competition. < Back Announcing Winners of the 2026 Crash Wear Merch Design Competition 12 Jun 2026 We are excited to announce the three winners of our 2026 Crash Wear Merch Design Competition. We are excited to announce the three winners of our 2026 Crash Wear Merch Design Competition. Each entry was unique and speaks to what ME/CFS Canterbury West Coast is all about, community, advocacy, and the lived experience of people with ME/CFS and Long Covid in Canterbury and the West Coast. The Winning Designs Rachel Rockell - Our Mission and Vision Rachel designed a blue hoodie that keeps our signature colour and logo on the front. On the back, yellow daisies sit alongside the mission and vision of ME/CFS Canterbury West Coast. Rachel chose daisies to represent friendship, joy, cheerfulness and loyalty, qualities she wants everyone who wears it to carry with them. [ Purchase Rachel's design here ] Karen Morton - Seven Spoons Karen's entry is a photograph from a larger photographic essay she is creating about Spoon Theory - the concept used by many people with chronic illness to describe living with limited and unpredictable energy. Seven blue spoons, intentionally blurred to reflect the brain fog that so many in our community live with every day. Her opening line says it simply: "I woke with only seven spoons today." [ Purchase Karen's design here ] Tamara Barker - Forget M.E. Not Tamara digitally drew a forget-me-not flower, duplicated in varying sizes and arranged into a circle, with the words Forget M.E. Not along the edge. The forget-me-not is a symbol long associated with ME/CFS, and for Tamara it represents the millions of people around the world who are missing from their lives because of this illness. [ Purchase Tamara's design here ] Take a look at all the merch options A couple of dollars from every purchase goes directly toward supporting people with ME/CFS and Long Covid in Canterbury and the West Coast so please check out our winning designs! Keywords: ME/CFS Canterbury, Crash Wear merch, ME/CFS design competition, Long Covid Canterbury, Myalgic Encephalomyelitis New Zealand, ME/CFS clothing New Zealand, Spoon Theory, ME/CFS awareness, chronic illness merch New Zealand, forget me not ME/CFS Previous Next

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. 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 The Healthify website also has advice for making the most of health care provider visits in New Zealand www.healthify.nz/hauora-wellbeing/h/healthcare-provider-visits . 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.info.health.nz/health-topics/conditions-treatments/brain-and-nerves/chronic-fatigue-syndrome . 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. Your doctor may also be interested to view the excellent 96 page 'Clinical Care Guide: Managing ME/CFS, Long COVID, & IACCs' from Bateman Horne Centre , USA, who are leading international ME/CFS clinicians. Also see our links for health providers . Forms to help you plan for an appointment A planning sheet allows you to write down what you want to share and how you want to say it, and also, to take notes about what is said in the appointment. We suggest using one of the following templates (these are not ME/CFS specific) to get your thoughts and priorities organised before your appointment: The single page Preparing Information for your Doctor Appointment template from Emerge Australia, a ME/CFS charity. This form provides space for you to write your goals and questions for this appointment, some notes about follow-up from your previous appointment, and more. The Appointment Day template set (7 editable pdf templates) is a non-ME/CFS specific set of single-page forms available for free from BeforeMyVisit.com, an AI health platform based in Ireland. Take a look and see if you would find any of these useful. They also have an AI tool that you might want to try out. The Health Quality & Safety Commission, NZ, also has a two-page Plan for your next Health Care Visit sheet which is available in different formats and languages . Forms for making your illness more visible There are a variety of forms and tools available to make the symptoms and impact of living with chronic illness more visible to your health team. Think about what you want to share… Is it your reduced capacity to do things, or what your symptoms are, or both? FUNCAP The Functional Capacity Questionnaire was developed for people who experience post-exertional malaise. It comes in two question lengths (55 and 27) to document your functional capacity, support needs, and loss of independence for a range of activities... personal hygiene and basic functions, walking and moving around, being upright, activities in the home, communication, activities outside your home, reactions to light and sound, and concentration. There is an online version of FUNCAP55 which generates a pdf of your results. For iPhone users, there is a FUNCAP27 app. For others, print the FUNCAP27 pdf and calculate your own results. A research article was published in 2024 to document why and how the questionnaire was developed. Long COVID For people with Long COVID, the two-page Post COVID Symptom Map, developed by Physiotherapy New Zealand for Ministry of Health, highlights symptom severity and functional disability. Bateman Horne Centre Forms The single-page editable Good Day Bad Day Questionnaire from Bateman Horne Centre has ten questions for you to answer to highlight your range of function on baseline/good days and PEM/crashed/bad days and your hours of upright activity (HUA). BHC also has a Health Assessment worksheet to note symptom scores, hours of upright activity, pain areas and appointment priorities. Both forms have been developed for ME/CFS and related chronic illness. Emerge Australia Forms The single-page Symptom Severity and Severity Hierarchy Profile from Emerge Australia allows you to identify your symptoms, their severity and your priority in having them addressed. They also have a Sleep and Pain Profile form. Both forms have been developed for ME/CFS and related chronic illness. Basic ME/CFS Diary Our Activity and Symptom Diary allows you to monitor and log your activity, biometrics, and symptoms over 7 days. This may help you and your health team to identify what triggers post-exertional malaise for you and what your activity baseline and pacing needs are. Generic Symptom Severity Scale Form The two-page editable Symptom Severity Scale from Care Patron is not ME/CFS specific. It includes space to rate and describe your symptoms and their impact. 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 Arowhenua Whānau 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.