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We are delighted to announce that physiotherapists who have access to the Allied Healthways website provided by the CDHB now have appropriate advice available in the PhysioFITT guidance for ME/CFS. < Back New guidance from CDHB for physiotherapists 25 Jun 2021 We are delighted to announce that physiotherapists who have access to the Allied Healthways website provided by the CDHB now have appropriate advice available in the PhysioFITT guidance for ME/CFS. We are grateful to the clinical editors from the Canterbury District Health Board who have worked with us recently to provide up-to-date guidance about ME/CFS for physiotherapists working with the PhysioFITT programme. This new guidance is available on the CDHB's Allied Healthways online platform, and will help health professionals to be aware of current understanding of this debilitating illness, and the need to move away from prior advice that is no longer recommended. Under the PhysioFITT program, physiotherapists assess the clinical context of the patient and deliver a tailored assessment and activity plan appropriate to their health condition(s). Key points made for ME/CFS clients: Avoid exercise tests that may trigger post-exertional malaise (PEM). Check for Orthostatic Intolerance. Graded Exercise Therapy (GET) is not recommended for ME/CFS. Exercise should be used for physical maintenance (core strength, bone density and enjoyment) and be at a level to avoid post-exertional malaise (PEM). If PEM is experienced frequently, consider reducing rather than increasing activity in order to improve overall wellbeing. It may be more helpful to focus on daily activities than formal exercise. Make #movementforlife safe for #MyalgicEncephalomyelitis #ChronicFatigueSyndrome Previous Next

Library Our library of books and limited equipment is available to members free of charge. The books in our library have been selected or donated by past and current members and supporters of MECFS Canterbury. Please note that it is not our role to endorse all books or all content of each book. CLICK TO VIEW ONLINE CATALOGUE The library includes books on evidence-based management of ME/CFS and other approaches, books about coping with long term chronic illness, and fiction related to ME/CFS as well. You can visit the library in person, but most people request that we post items out to them. We can provide you with a post paid courier bag for returning the books, and when you are ready to return the items, we can arrange for NZ Post to pick up from your home. Our Recommendations For those new to ME/CFS we recommend books by Dr Rosamund Vallings, Dr Charles Shepherd, and Dr David Bell. In particular: 'Chronic Fatigue Syndrome M.E. - Symptoms Diagnosis Management' by Dr Rosamund Vallings CLICK TO VIEW IN CATALOGUE For in-depth clinical guidance, we recommend: 'ME/CFS/PVFS An explanation of the Key Clinical Issues' by Dr Charles Shephard and updated regularly by the ME Association UK CLICK TO VIEW IN CATALOGUE Please seek medical advice: Any suggestions or advice given in any of the books in our library, should not replace medical advice, and we do not accept any responsibility for any treatment undertaken. Please discuss with your GP or health care team any changes to your treatment regime before implementing them, including the severity of your illness and any other health issues. We are all different, and unfortunately, what works for one person may not work for another. It is best to be careful. Can't find the book you want to read? Let us know if you would like us to get a book in, and we will do our best to purchase it for the library. First Name Last Name Email Message Thanks for your query! Send

The Bateman Horne Centre based in Utah, USA, is one of the leading ME/CFS clinical education organisations in the world. In May they released an excellent 96 page ‘Clinical Care Guide: Managing ME/CFS, Long COVID...' < Back BHC publishes Clinical Care Guide 6 May 2025 The Bateman Horne Centre based in Utah, USA, is one of the leading ME/CFS clinical education organisations in the world. In May they released an excellent 96 page ‘Clinical Care Guide: Managing ME/CFS, Long COVID...' The Bateman Horne Centre based in Utah, USA, is one of the leading ME/CFS clinical education organisations in the world. In May they released an excellent 96 page ‘Clinical Care Guide: Managing ME/CFS, Long COVID… You can view the guide online, https://batemanhornecenter.org/wp-content/uploads/2025/05/Clinical-Care-Guide-First-Edition-2025-1.pdf or subscribe to receive notification of updates. https://batemanhornecenter.org/clinical_roadmap/ The guide describes the well-established clinical framework for ME/CFS, grounded in decades of research and patient care, for recognizing and addressing hallmark features such as post-exertional malaise (PEM), autonomic dysfunction, and multisystem impairment. By applying this blueprint and targeting the various components with structured, evidence-informed care, clinicians can deliver meaningful interventions to improve patient outcomes... This toolkit provides: ✦ A structured approach to assessment and management ✦ Guidance on key diagnostic tools and function-based assessments ✦ Condition-specific treatment strategies ✦ Disability and accommodation supports ✦ CME opportunities and additional educational resources Previous Next

Dysautonomia often appears invisible, but it has a significant impact on daily life. < Back October is Dysautonomia Awareness Month 8 Oct 2025 Dysautonomia often appears invisible, but it has a significant impact on daily life. October is Dysautonomia Awareness Month. Many people with ME/CFS also live with Dysautonomia.  Dysautonomia is an umbrella term for a number of conditions that affect the autonomic nervous system (ANS). The ANS controls functions our bodies should regulate automatically, such as heart rate, blood pressure, and digestion. Some of the Dysautonomia conditions are: Orthostatic Intolerance (OI), Postural Orthostatic Tachycardia Syndrome (POTS), Inappropriate Sinus Tachycardia (IST), Neurocardiogenic Syncope (NCS) / Vasovagal Syncope, Orthostatic Hypotension, Multiple System Atrophy (MSA), Familial Dysautonomia and Pure Autonomic Failure (PAF). This can mean: Rapid heart rate when standing  Problems with temperature regulation Needing to sit or lie down to avoid fainting, headaches, nausea and other symptoms Feeling worse in the heat Needing to pace carefully to avoid crashes Dysautonomia often appears invisible, but it has a significant impact on daily life. Raising awareness is the first step to better recognition, care, and support. MANAGEMENT APPROACHES: OI symptoms are one of the most treatable symptoms associated with ME/CFS and it is usually possible to increase functional capacity through the following management approaches: Increase blood volume by drinking water and consuming more sodium (if safe for you to do so). Provide mechanical support by using compression garments and postural counter manoeuvres (movement that moves the blood up the legs to the heart). Make lifestyle adjustments such as avoiding overheating, alcohol, large meals. Introduce movement or gentle exercise done in a lying down or recumbent position first. #DysautonomiaAwareness #MECFS #InvisibleIllness #POTS ___________________________ FURTHER READING: To find out more, we recommend: https://www.dysautonomiainternational.org Recording of our OI Presentation https://youtu.be/HSj8zcK7XK0?si=dgvFt_RuzUHcYhRI https://www.cdc.gov/me-cfs/media/pdfs/2025/06/CDC-Dysauto-MECFS-Dec-4-2024-Alt-Text-Final.pdf https://healthify.nz/health-a-z/p/postural-orthostatic-tachycardia-syndrome-pots ME/CFS Canterbury West Coast Disclaimer Previous Next

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.

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.

When we live with a debilitating chronic illness like ME/CFS, we may be unable to work to generate income for ourselves and our families. Depending on our family situation, other income and assets, there may be some income support available from Work and Income, a department of the Ministry of Social Development (MSD). We have summarised key information here on this page. When we live with a debilitating chronic illness like ME/CFS, we may be unable to work to generate income for ourselves and our families. Depending on our family situation, other income and assets, there may be some income support available from Work and Income, a department of the Ministry of Social Development (MSD). We know it can be difficult working through the information and the application steps, so we have summarised key information here on this page. The advocates in our Work and Income Service are also available to provide confidential support to help you to access any assistance that you are eligible for from Work and Income. This service is normally delivered through email, but it depends what suits you best - text, phone call, zoom call or home visits are also an option. The support may include: Helping to determine your eligibility for the different financial benefits and allowances. Assisting in filling out paperwork and applications. With your permission, acting on your behalf as your agent. Working with your GP to ensure any required medical certificates reflect the severity and impacts of your illness. Supporting you through issues with Work and Income. Advocating on your behalf with Work and Income. To refer yourself to the Work and Income Service, sign up as a member and email us to tell us what help would be beneficial, and one of our team will be in touch. Take your time reviewing the information below. 'CHECK WHAT YOU MIGHT GET' TOOL We encourage people to use the ‘Check what you might get’ tool from MSD to find out what you might be eligible for. This takes around five minutes to complete. The tool provides information about all the types of financial assistance you may qualify for and why, as well as what assistance you are unlikely to qualify for and why. COMMUNITY SERVICES CARD The Community Services Card can help you with the costs of health care and public transport. This means you could pay less on some health services, prescriptions and fares for public transport. You don’t have to be on a benefit to qualify for the card, but it is income tested. Work and Income will normally send the card to you if you are eligible. If they have not, you can apply for it online. Benefits and Allowances Work and Income have a range of benefits and allowances which have their own eligibility criteria and you will need to submit various supporting information with your application. We have a single page handout that overviews the key benefits and allowances available, and whether they are income or asset tested. Some of the benefits that may be available to you include: Supported Living Payment (SLP) MORE INFORMATION Support Living Payment (SLP) is a weekly payment for people who are severely restricted in their ability to work due to a health condition. This requires a medical certificate from your GP to confirm you cannot regularly work more than 15 hours per week for the next 2 years. We have a guidance sheet for GPs on the criteria and medical certification requirements for the Supported Living Payment. Email the link to your GP, print out the handout, or ask us to post you a printed copy. Jobseeker Support MORE INFORMATION Jobseeker Support is a temporary benefit available when a health condition is affecting your ability to work fulltime. Jobseeker Support with Medical Deferral MORE INFORMATION Jobseeker Support with Medical Deferral is available when a health practitioner has confirmed you cannot work fulltime due to a health condition. Disability Allowance MORE INFORMATION Disability Allowance can cover regular ongoing costs related to a medical or health need up to $75 per week. It is income tested. This allowance is also available for the Non-Beneficiary if all eligibility criteria are met. Here are some of the things that you may be able to get your GP to confirm that you need covered by the Disability Allowance: Doctor's fees. Prescription fees. Travel to your doctor, specialist, hospital or counsellor. Counsellor. Heating. Medical alarm rental and monitoring. Hearing aid batteries. Lawn mowing. Gardening. Special clothing requirements e.g. compression stockings. Exterior window cleaning. Special foods e.g. gluten free foods. Other treatments, such as: Chiropractor Podiatry Physiotherapy/Gym fees. Herbal supplements (e.g.pro-biotics). Unfunded prescription medications. If you want to access counselling but are already receiving the maximum Disability Allowance, the counselling fees may be able to be covered by Temporary Additional Support (see further below). We have a guidance sheet for GPs on the criteria, medical certification requirements, and example eligible costs for the Disability Allowance. Email the link to your GP, print out the handout, or ask us to post you a printed copy. Accommodation Supplement MORE INFORMATION Accommodation Supplement provides weekly assistance towards your rent, board or mortgage payments. It is income and asset tested. This is also available for the Non-Beneficiary if all eligibility criteria are met. Temporary Additional Support (TAS) MORE INFORMATION Temporary Additional Support (TAS) is a weekly payment to help with essential daily living costs when you don’t have enough money for these. It can be paid for up to 13 weeks and would need to be re-applied for after that. It is available for Non-Beneficiaries if they meet the income and asset tests, and the other criteria. Special Needs Grant MORE INFORMATION Special Needs Grant may cover one-off essential costs when you don’t have the funds. You do not need to pay this back. It is asset and income tested, and can be used for costs such as food, some dental treatment, health travel costs, medical equipment. Recoverable Assistance Grant MORE INFORMATION Recoverable Assistance Grant may cover essential costs not covered by the Special Needs Grant. This is generally paid direct to the supplier on your behalf. Repayments are automatically deducted from your weekly payments, at a rate agreed on with the case manager processing the payment. Costs that may be covered include clothing, car repairs, glasses, hearing aids. Supported Living Payment for Carers MORE INFORMATION Supported Living Payment for Carers is a weekly payment if you are caring fulltime for a person would otherwise need to receive hospital or residential-level care. Child Care Subsidy MORE INFORMATION Child Care Subsidy assists towards pre-school childcare costs and may be useful to consider accessing if you care for children while living with chronic illness, to ensure that you have opportunities to rest. Applying for Support Use the MyMSD website to submit your applications to Work and Income and to give notice of any changes. Ensure you have your MSD Client Number. This will be on your Community Services Card, Super Gold Card, or letters from MSD. If you don’t have a client number yet, use the online form to Request a client number . To register for a MyMSD account, go to www.my.msd.govt.nz/register To apply for financial assistance from Work and Income, visit the MyMSD website and click the Apply button. Remember that you can start an online application and then save it. Just come back within 20 days to complete. Once you have submitted your application, Work and Income will ask you to submit information such as evidence of costs, medical certificates, and proof of bank account and IRD number. You will normally have 20 working days to provide this. If you disagree with a decision, you will have 90 days to request a review. Please get in touch with our team to assist you with the review of the decision. Emailing Work and Income People with ME/CFS often have difficulty communicating on the phone and Work and Income offers communication by email for this situation, under their Deaf Services. When communicating by email, compose the email as follows: Set the To address to MSD_Deaf_Services@msd.govt.nz In the Subject bar type your Full Name and Client Number . Include the following information in your email: At the start, include your full name, client number, date of birth and current address, as identification. State that email contact is preferred due to Chronic Illness, limitations and difficulty talking on a phone. e.g. “I have the chronic illness ME/CFS and this impacts my cognitive abilities. I find talking and responding to questions on the phone very difficult. My preferred method of communication is by email. ” State what you want to know or what you need to contact Work and Income about. Appoint an Agent You can choose to have someone else act on your behalf in some or all of your dealings with Work and Income. This person is called an agent , and they volunteer their time. Agent for a single event: You can verbally ask to have a support person who is with you (on a phone call or at a meeting), to act on your behalf. This verbal agreement will last just for that meeting. When you want someone to act on your behalf for longer: Select the agent with care. It could be a friend or family member, MECFS Canterbury, or a benefit advisory service. You can still talk to MSD and act for yourself when you are able to. Indicate on the ‘Appointment of Agent’ form the scope of tasks that the agent can help with. This can range from making enquiries on your behalf, signing forms, right through to all interactions. (Note: We have a simplified form if you wish to appoint us as an agent.) More Information Benefit info from Work and Income www.workandincome.govt.nz/eligibility/health-and-disability/index.html www.workandincome.govt.nz/products/a-z-benefits/ MSD Policies www.workandincome.govt.nz/map MECFS Canterbury Contact our Work and Income Advocacy team . Benefit Advisory Services if you live in Christchurch or the Waimakariri district, the team at Beneficiary Advisory Services offer free advice and advocacy If you live outside our region, contact your local ME/CFS support organisation, or search www.cab.org.nz to find your local benefit advisory service. Rare Disorders NZ Work and Income information www.raredisorders.org.nz/patient-support/financial-assistance/financial-support-available-from-work-and-income

Loungewear and accessories for the ME/CFS community. Made to be lived in, rested in, and seen in. Wear a hoodie or tshirt to tell some of your story. Make a statement while supporting our charity. Crash Wear We're so excited to launch our official ME/CFS Canterbury merch range! Crash Wear is a collection designed with the ME/CFS community at heart - whether you live with it, care for someone who does, or advocate for awareness. From soft, sensory-friendly loungewear to bold minimalist accessories, every piece makes a quiet but powerful statement. Whether you're pacing in a hoodie, resting with a cup of tea, or advocating from bed with a statement pillowcase, each item helps support our local work for people with ME/CFS and Long Covid right here in Canterbury and the West Coast. We receive a small amount from every sale, and 100% of that goes directly to our advocacy, support, and awareness efforts. So, when you buy something, you're helping to make a real difference. Crash Wear Made to be lived in, rested in, and seen in. Wear your story. Support your community. Visit our Crash Wear Store

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

Privacy notice for MECFS Canterbury MECFS Canterbury complies with the Privacy Act and the Health Information Privacy Code . If you are not satisfied with our response to any privacy-related concern you raise with us, you can contact the Privacy Commissioner . Collection and Use of Personal Information We may ask you to provide and collect personal information from you, including the following information: Name, Age, Ethnicity Contact information Interactions with us Membership status Survey responses (not linked to personal information) Consent agreements for services Health details Clinical notes and support activity We collect your personal information in order to: Stay in touch and inform you about our activities. Provide statistical summarised information to our funding providers. Provide support and services to you, and to respond to feedback and queries. With your permission, we may share relevant health information with other healthcare professionals in a confidential manner, with the aim of improving the support you receive from your healthcare team. Providing some information is optional. If you choose not to provide contact details and information about your health, we may not be able to provide you with expected services. We keep your information safe by storing it securely (password-protected electronic storage and databases) and allowing only those authorised to see it. Paper based records are shredded when no longer needed. You have the right to ask for a copy of any personal information we hold about you, and to ask for it to be corrected if you think it is wrong. If you would like to ask for a copy of your information, or to have it corrected, please contact us at info@mecfscanterbury.nz , or 03-365-5887. Collection and Use of Website Visit Information Statistical Information We may collect statistical information about your visit to this website to help us improve it. This information is aggregated and doesn’t identify you personally. It includes: Your IP address The search terms you used The pages you visited on our site and the links you clicked on The date and time you visited the site The referring site (if any) from which you clicked through to this site Your operating system, for example Windows XP, Mac OS X The type of web browser you use, such as Edge, Chrome or Mozilla Firefox Other things like your screen resolution and the language setting of your browser. The statistical information referred to above can be viewed by site administrators and certain other staff. It may also be shared with government agencies. Google Analytics We use Google Analytics on our website to track your actions and help us optimise our site for conversions and usability. While we can see data gathered over a timeframe, we do not collect personally identifying information from any source as part of the terms of service of Google Analytics. A condition of our use of Google Analytics is that we make reasonable endeavours to bring to your attention the following statement: This website uses Google Analytics, a web analytics service provided by Google, Inc. (“Google”). Google Analytics uses “cookies”, which are text files placed on your computer, to help the website analyse how users use the site. The information generated by the cookie about your use of the website (including your IP address) will be transmitted to and stored by Google on servers in the United States. Google will use this information for the purpose of evaluating your use of the website, compiling reports on website activity for website operators and providing other services relating to website activity and internet usage. Google may also transfer this information to third parties where required to do so by law, or where such third parties process the information on Google’s behalf. Google will not associate your IP address with any other data held by Google. You may refuse the use of cookies by selecting the appropriate settings on your browser, however, please note that if you do this you may not be able to use the full functionality of this website. By using this website, you consent to the processing of data about you by Google in the manner and for the purposes set out above. We have implemented Google Analytics demographic and interest reporting based on the Google Display Network in order to provide information about users that is used to optimise our website. Any data collected by Google for the purposes of Google Analytics will be treated according to Google’s Privacy Policy. If you would like to opt-out of being tracked by Google Analytics, then you can do so using the Google Analytics Opt-out Browser Add-on. Cookies This site generates persistent session cookies (that is, they have an expiry date and are removed on that date) for the purpose of monitoring site usage. The cookies don’t collect personal information. You can disable them or clear them out of your web browser without affecting your ability to use the site.

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

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.