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  • Working with your Doctor | MECFS Canterbury

    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 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. 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. 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.

  • LINKS | MECFS Canterbury

    Resources and Links Take your time going through this information list. Just read or visit the content that is of interest to you. We only share the best clinically accepted and verified guidelines and information for ME/CFS and Long Covid. Be aware that a lot of content online or in books is not evidence-based, and that more research is needed to fully understand the causes and best treatments for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. What helps one person, will not necessarily help someone else. Please refer to our ‘Living with ME/CFS ’ content for practical advice on pacing and supports that may make a difference to your wellbeing and quality of life. For Patients and Whanau READ MORE For Long Covid READ MORE For Young People READ MORE For Health Professionals READ MORE For Parents READ MORE Connecting online with others READ MORE For Health Professionals Refer to your HealthPathways for regional clinical advice for ME/CFS. 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. NICE in the UK published updated guidelines for ME/CFS in 2021. CDC in the USA maintains advice and handouts about ME/CFS. Mayo Clinic in the USA have also published guidance for ME/CFS – Consensus Recommendations and Concise Review for Clinicians . Dialogues for a neglected illness project (UK) has produced a series of 15 minute videos covering different aspects of ME/CFS including Post-Exertional Malaise and the issues involved that have lead to poor care and insufficient research. M.E. Awareness NZ has curated a list of information and resources for health professionals, including Continuing Medical Education that is endorsed by RNZCGP. For Patients and Whānau Subscribe to our channel! Te Whatu Ora has provided online information about ME/CFS on HealthInfo. TAKE ME THERE The ‘What is ME/CFS? ’ video from the Bateman Horne Center (ME/CFS specialist centre), USA, is under 6 minutes long and provides a basic introduction into the IOM 2015 diagnostic criteria for ME/CFS. It is intended as education for medical providers but is also a good introduction for patients and the public. M.E. Awareness NZ has curated a list of resources for people affected by ME/CFS TAKE ME THERE Join ANZMES , the national advisory and support organisation for ME/CFS in New Zealand, to support their advocacy efforts. TAKE ME THERE The Unrest film tells the story of Jennifer Brea and others and what ME/CFS looks like behind the scenes. It also includes a history of the disease including contributions from Dr Nancy Klimas and Dr Ron Davis. Our Youtube channel has a range of recorded presentations on a variety of topics from past education meetings. E.g. Gut Health, Orthostatic Intolerance. TAKE ME THERE For Long COVID The Long Covid Support Tool , published by ME Support – NZ, is an excellent series of videos and resources. Useful for people with ME/CFS as well. TAKE ME THERE Long Covid Support Aotearoa provides information and community. TAKE ME THERE Self-guided online courses for Long COVID recovery developed by physiotherapists at Breathability, New Zealand. TAKE ME THERE Information from the Long Covid Physio , an international association. TAKE ME THERE 'What is Long COVID? (and ME/CFS?)' from the ME Association UK. TAKE ME THERE For Parents Join the private Facebook group NZ Carers for Young People with ME and related illnesses TAKE ME THERE Listening to Families , who are based in Christchurch, have produced a series of short videos designed to support and answer questions for families exploring a diagnosis of ME/CFS and management for their child or teenager. 80 minutes in total, with 19 videos from 1 to 8 minutes long, covering a range of relevant topics. TAKE ME THERE For Young People ME Support, based in Auckland, facilitate a free online Discord community for teens living with ME/CFS. Our nurses can refer you. Connecting online with others ME/CFS is a chronic complex condition that makes daily life difficult and causes social isolation. Online peer support groups can be helpful for people with ME/CFS as they can connect people who share similar experiences. People can come together online to socialise, share information and offer support to one another. It is okay to take a break from them as well, and shift our focus to other things. New Zealand based online forums: Join our online peer support community in a private Facebook group for people affected by ME/CFS or related illness who live in Canterbury or the West Coast of New Zealand (or elsewhere in the South Island). Join the friendly Canterbury Fibromyalgia and CFS/ME Group to connect and find out about informal local social catchups. Join the national online community facilitated by ME Support – NZ, who are based in Auckland. Other groups you may wish to check out: NZ M.E/CFS Catch ups for a holistic approach; For parents, join NZCare4ME for carers of young people with ME/CFS and other similar chronic illnesses (such as POTS, MCAD, EDS, and Fibromyalgia). For young people, join a Facebook community for NZ Teens/Early 20's with ME/CFS and Related Illnesses, or CFS / Fibro: Young Adults Group for people aged 18 to 35 (not very active at present). For young people (aged 12-20) living with any illness or disability in NZ and Australia, and their siblings, the Livewire community provides safe social connection and positive distraction. If you are severely unwell with ME/CFS, join the NZ Severe Facebook community. For long COVID, join the Long Covid Support Aotearoa and Long Covid Kids New Zealand Facebook communities. For fibromyalgia, join Fibromyalgia NZ Support and the Fibromyalgia & CFS NZ Support Facebook communities. For Ehlers-Dahlos Syndrome, join the national Loosely speaking - Ehlers Danlos NZ support group, the South Island support hub , or other affinity support groups . For Mast Cell Activation Syndrome, join Mast Cell NZ . International online forums: Phoenix Rising is the largest and oldest international online forum for complex chronic illnesses such as ME/CFS, fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases. It uses XenForo community platform, rather than Facebook. Science for ME focuses on scientific discussion but is also a useful place for support and advocacy. There are public and member-only areas within the forum. It uses the XenForo community platform, rather than Facebook. #MEAction, a global movement fighting for recognition, education and research for people with ME/CFS, has several international affinity groups on Facebook for people, such as pregnancy and parenting, seniors, and caregivers. For teens and young adults up to mid 20's, check out the Teens with ME/CFS and Related Illnesses, and Teens With Chronic Illnesses Facebook communities. If you have severe ME/CFS, join the international online support group. For parents of young people with ME/CFS, join the large Parents of Kids & Teens with ME/CFS and Related Illnesses Facebook community. For parents of adults with ME/CFS, join Parents of adult children with ME/CFS Facebook community. For long COVID, join COVID-19 Long Haulers Support Facebook community, and search for others.

  • Activity Management | MECFS Canterbury

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

  • ‘Years in Lockdown’ video for International ME Awareness Day, 12th May 2020 | MECFS Canterbury

    Many people living with ME/CFS live in permanent lockdown. When you move out of lockdown - and get back into a fulfilling life with a variety of choices and activities - we ask you to remember those that will stay in lockdown because they have ME/CFS. < Back ‘Years in Lockdown’ video for International ME Awareness Day, 12th May 2020 11 May 2020 Many people living with ME/CFS live in permanent lockdown. When you move out of lockdown - and get back into a fulfilling life with a variety of choices and activities - we ask you to remember those that will stay in lockdown because they have ME/CFS. For ME Awareness Day 2020 we prepared a short 2.5 minute video to highlight that many people living with ME/CFS live in permanent lockdown. When you move out of lockdown - and get back into a fulfilling life with a variety of choices and activities - we ask you to remember those who will stay in lockdown because they have ME/CFS.” https://youtu.be/vuRrh7NiknQ Previous Next

  • New Health Information page for ME/CFS from Health NZ | MECFS Canterbury

    Health NZ has acknowledged that ME/CFS is a debilitating, long-term illness in the new Health Conditions section on their website. < Back New Health Information page for ME/CFS from Health NZ 22 Sept 2025 Health NZ has acknowledged that ME/CFS is a debilitating, long-term illness in the new Health Conditions section on their website. The Health Conditions pages are intended for the public to provide introductory information about health conditions and their causes, symptoms, diagnosis, and treatments. For Chronic Fatigue Syndrome, Health NZ highlights the key symptoms, the diagnostic criteria in use in New Health NZ has acknowledged that ME/CFS is a debilitating, long-term illness in the new Health Conditions section on their website. For Chronic Fatigue Syndrome, Health NZ highlights the key symptoms, the diagnostic criteria in use in New Zealand, the need to pace your activity to avoid triggering Post Exertional Malaise, and more. You can read the information and share it with whānau from here: https://info.health.nz/conditions-treatments/brain-and-nerves/chronic-fatigue-syndrome It’s worth mentioning that GPs have access to more extensive clinical guidance for ME/CFS on Health NZ’s Health Pathways website for doctors. The Health Pathways for ME/CFS was updated and extended in February 2025, so do ask your GP if they have read the guidance for ME/CFS on Health Pathways recently. Previous Next

  • New clinical guidance for ME/CFS on HealthPathways | MECFS Canterbury

    Announcing updated guidance for clinicians in Canterbury and West Coast from Health NZ. We encourage health professionals who have access to HealthPathways to become familiar with the extended guidance for diagnosis, treatment and management of this debilitating condition. < Back New clinical guidance for ME/CFS on HealthPathways 12 May 2025 Announcing updated guidance for clinicians in Canterbury and West Coast from Health NZ. We encourage health professionals who have access to HealthPathways to become familiar with the extended guidance for diagnosis, treatment and management of this debilitating condition. '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. There is often standardised national content for a topic, with each region then providing local information to reflect local supports and services on the regions own view of the HealthPathways. We are excited to announce that the HealthPathways team published updated guidance for #MECFS (#MyalgicEncephalomyelitis / #ChronicFatigueSyndrome ) on the Canterbury Community HealthPathways website on 12th March 2025. This information is also available to GPs on the West Coast of NZ. The pathway includes current evidence-based best-practice clinical advice for health professionals. The update includes: • More information on criteria to help with diagnosis. • More information about assessing and supporting patients with severe ME/CFS. • Extended management guidance for specific symptoms. We encourage health professionals who have access to HealthPathways to become familiar with the extended guidance for diagnosis, treatment and management of this debilitating condition. Link: https://canterbury.communityhealthpathways.org/44978.htm Please reach out to MECFS Canterbury to access the latest research summaries and other guidance, or to assist you in other ways. ____________________________ 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. Click on this link to view and download the letter in our google drive... https://drive.google.com/file/d/19hkC_DkT4-7C0y2ALhgFFauTf9LZ6DR-/view?usp=drive_link ___________________________ FURTHER READING: To find out more, we recommend: ✦ For patients: www.healthinfo.org.nz/Chronic-fatigue-syndrome-CFS.htm ✦ Guidance from us: https://www.mecfscanterbury.nz/living-with-me-cfs ✦ CDC (USA): https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html ✦ NICE (UK): https://www.nice.org.uk/guidance/ng206 ✦ Mayo Clinic (USA): https://www.mayoclinicproceedings.org/article/s0025-6196(23)00402-0/fulltext ___________________________ DISCLAIMER: Please note that MECFS Canterbury does not recommend any treatments. Any advice, either explicit or implied, is not intended to replace qualified medical advice. We do not accept any responsibility for any treatment undertaken by readers of any articles or other content, or for any error or omission in connection with any content published on our social media. MECFS Canterbury is not responsible for the accuracy of content that we link to. The inclusion of such links does not imply endorsement by MECFS Canterbury. Previous Next

  • Give-a-little Day 2nd December 2025 | MECFS Canterbury

    Radical Rest Challenge - Nominate a friend or two (or yourself) < Back Give-a-little Day 2nd December 2025 19 Nov 2025 Radical Rest Challenge - Nominate a friend or two (or yourself) This Give-a-Little day, we’re inviting our extended community to slow down... Radically! People living with ME/CFS and Long Covid don’t get to choose to rest. It’s not self care... it’s survival. For many people with ME/CFS, especially the approximately 25% living with Severe ME/CFS, even seemingly small activities cause debilitating symptoms. With a broken energy system at a cellular level, it is critical to #StopRestPace and #PlanPacePrioritise to stabilise symptoms and avoid reducing functionality further. So here’s our #RadicalRestChallenge challenge: ✦ Nominate a friend or two (or yourself) ✦ Radically Rest for 25 minutes – This means no screens, no distractions, just full rest with eyes closed. ✦ Donate $10 to support people in our community living with ME/CFS and Long Covid. If you try the #RadicalRestChallenge but can’t make it through the full 25 minutes that’s ok, It’s harder than it sounds! For every minute you can’t complete, add $1 per minute to your give-a-little donation total. It’s a lighthearted challenge with a serious message: for people with ME/CFS, rest is not optional... it’s essential! Let’s show up for those who can’t - by resting with them or donating for them. ✦ Date: Tuesday 2 nd December 2025 ✦ Where: Visit our give-a-little page https://givealittle.co.nz/org/mecfs-group-canterbury-inc ✦ Challenge: #RadicalRestChallenge #GiveALittleDay Every dollar and every moment of awareness makes a difference. Haven't heard the term before? What is Radical Rest? It means complete, uninterrupted rest. No screens, no conversations, no stimulation. People often opt for earplugs and an eye mask. It's a level of stillness that people with ME/CFS rely on to prevent worsening symptoms and to allow their bodies to try and maintain baseline. Download our Radical Rest Challenge poster to share with others. Previous Next

  • Launch of our Crash Wear merch range | MECFS Canterbury

    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. Wear your story. Support your community. < Back Launch of our Crash Wear merch range 18 Jul 2025 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. Wear your story. Support your community. 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 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. https://mecfscanterbury.digitees.co.nz/ Previous Next

  • Our Partners | MECFS Canterbury

    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.

  • LIVING WITH ME/CFS | MECFS Canterbury

    We have gathered some information that may help you to stabilise your symptoms and improve your quality of life in other ways. Topics include activity management, working with your doctor, financial assistance, and more. We will add to this over time, so please check back. Living with ME/CFS The best approach when learning to live with Myalgic Encephalomyelitis /Chronic Fatigue Syndrome is to implement regular rest and to prioritise what you spend your limited, faulty energy on – we call this ‘pacing’. This is understood to give you the best chance for improving. The aim of pacing is to minimise Post-Exertional Malaise (PEM) from occurring, to stabilise symptoms, and to avoid getting worse. It will take some time to explore: • what your activity limits are, • what activities you can manage and what you can’t, and • what approaches help and what don’t. Your energy and wellness levels may change over time, so what is manageable will change too. Unfortunately, there are no treatments that are proven to be completely effective for ME/CFS yet, and not everyone finds benefit from the same approaches. A silver lining of the COVID-19 pandemic is that there is more research underway into post-viral illness and this should bring insight and treatments for ME/CFS also. Despite the lack of evidence-based treatments, there are some supplements, medications, aids, and lifestyle changes available that may provide some relief from symptoms or improve your quality of life in other ways. We have provided information about what expert clinicians suggest and what the ME/CFS community have found helpful in the sections below and will add to this over time. Talk to one of our Registered Nurses and/or find a doctor you trust to work with you. They may be able to help with pain, sleep problems and orthostatic intolerance (problems with being upright) and managing food sensitivities, as well as arrangements for home care, financial support, and counselling. Please be aware that a lot of content online or in books is not evidence-based. More research is needed to fully understand the causes and best treatments for ME/CFS. 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. Remember to give yourself permission to rest, practice pacing, accept offers of help, and to be kind to yourself. Activity Management READ MORE Working with your Doctor READ MORE Work and Income Assistance READ MORE Practical Supports READ MORE Lifehacks and Tips READ MORE Supplements and Treatments READ MORE Managing Specific Symptoms READ MORE Mental Wellbeing READ MORE How We Help READ MORE Easy and Ready-Made Meals READ MORE Crash Wear Merchandise READ MORE Discounts for our Community READ MORE

  • ME/CFS and its Management Presentation | MECFS Canterbury

    We invite you to watch Nurse Wendy Dragt’s talk about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and its Management – recording now available on our youtube channel. < Back ME/CFS and its Management Presentation 8 May 2025 We invite you to watch Nurse Wendy Dragt’s talk about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and its Management – recording now available on our youtube channel. We invite you to watch Nurse Wendy Dragt’s talk about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and its Management – now available on our youtube channel https://youtu.be/s8MV6lisdmM This presentation covers: ✦ What we know about ME/CFS ✦ The diagnostic criteria for ME/CFS ✦ Impacts and severity spectrum ✦ Key management principles and approaches ✦ How to make a meaningful life This recording provides useful information for people with ME/CFS, their health team, and whānau. At 69 minutes long, you may need to take some breaks and watch it over a couple of sessions. Expand the description for the video on youtube to access the pdf of the slide deck and a timestamped list of the slides, plus more. ___________________________ DISCLAIMER: Please note that ME/CFS Canterbury / West Coast does not recommend any treatments for any individual. Any advice, either explicit or implied, is not intended to replace qualified medical advice. We do not accept any responsibility for any treatment undertaken by readers of any articles or other content, or for any error or omission in connection with any content published on our social media. Previous Next

  • New guidance for ME/CFS from CDHB for allied health professionals | MECFS Canterbury

    The Allied Healthways website provides allied health professionals with guidance for a range of health conditions and concerns. The website now includes up to date information about ME/CFS. < Back New guidance for ME/CFS from CDHB for allied health professionals 22 Dec 2020 The Allied Healthways website provides allied health professionals with guidance for a range of health conditions and concerns. The website now includes up to date information about 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, occupational therapists, social workers, and other allied health professionals. 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. Key points: Graded Exercise Therapy (GET) is not recommended for ME/CFS and may cause harm. Exercise can be used for physical maintenance (core strength, bone density and enjoyment) but needs to be at a level that avoids post-exertional malaise (PEM). Cognitive Behavioural Therapy (CBT) is no longer recommended as a treatment for ME/CFS as there is no evidence of specific benefit for ME/CFS. However, counselling may assist patients with adjustment to living with a debilitating chronic illness. Provide support for 'pacing' activities. The aim is to reduce physical and mental activity to a level that can be sustained without triggering post-exertional malaise (PEM). Make #movementforlife safe for #MyalgicEncephalomyelitis #ChronicFatigueSyndrome Previous Next

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