Share this information about long COVID, it's management and some FAQs < Back New Long COVID Guidance on Healthify 30 Oct 2026 Share this information about long COVID, it's management and some FAQs Healthify is a trusted New Zealand website providing easy-to-understand health information and self-help resources for the public and guidance for health practitioners as well. The site is endorsed by the Royal NZ College of General Practitioners. Recently, we were invited by Healthify to assist with updating the content for long COVID. We reached out to Long Covid Support Aotearoa to work with us on this, and were delighted to have Catherine Appleby, LCSA committee member and a Nurse Practitioner, lead the development of the detailed content. Take a look at the new information which is spread across three pages. You may find it useful to share with your whānau and health team as well. Overview of long COVID Management of long COVID Long COVID FAQs Thank you to Catherine Appleby, Amanda Wyatt, our Nurse Team Lead, and Claire Budge, Clinical Editor at Healthify, for the huge amount of work on this project. Note: The accompanying information for health professionals still needs to be updated. Previous Next

Subscribe to our Newsletter Sign up to become a member to receive our bi-monthly newsletter. The newsletter includes information about managing and living with ME/CFS, latest research, our activities, plus more. BECOME A MEMBER VIEW OUR NEWSLETTERS Latest News We plan to share key updates about ME/CFS, Long COVID, and our organisation here. If you remember seeing a notice about new guidance or initiative in our newsletter or social media and want to revisit the details, it will be worth checking the updates listed below. 30 Oct 2026 New Long COVID Guidance on Healthify Share this information about long COVID, it's management and some FAQs Read More 25 Aug 2026 Our August 2026 newsletter is now available! Theme for this issue is responses in our annual survey. We also highlight some new guides for Ehlers-Danlos Syndrome and Dysautonomia Read More 8 Jul 2026 ‘I feel trapped’: 29-year-old Wellington woman hasn’t left upstairs bedroom for four months Paddy Gower Does Stuff: Woman hasn’t left upstairs bedroom for months Read More 29 Jun 2026 Our June 2026 newsletter is now available! Theme for this issue is Manual Vagus Nerve Stimulation. Read More 24 Jun 2026 2026 Annual Survey – Open Now Your feedback shapes what we do... Read More 22 Jun 2026 Find Support After an ME/CFS or Long Covid Diagnosis in Canterbury and the West Coast Being told you have Myalgic Encephalomyelitis (ME/CFS) or Long Covid can feel overwhelming and isolating. Read More Load More

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. Consider using a calendar to help you plan rest before and after high energy days. We have a simply Weekly Planner to assist with 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)

ME/CFS can greatly reduce our ability to do things other people may take for granted. Our world is largely structured around working, and for many people with ME/CFS this may not be an option. In this article we discuss the realities of working with ME/CFS. Working with ME/CFS ME/CFS can greatly reduce our ability to do things other people may take for granted. Our world is largely structured around working, and for many people with ME/CFS this may not be an option. But for people with mild or moderate ME/CFS, it may be possible to work anywhere from a few hours a week to full-time. Often this requires the person with limited capacity to choose between working and other aspects of life, such as housework, childcare and family responsibilities, rest and social needs. So, if working takes so much from our already limited lives, why work? In our current environment finances are a big motivator for everyone, but income isn’t the only thing we get from working. A job can provide us with social connection, a sense of purpose, goals, and a way to contribute to our families and communities. Chronic illness can be isolating, so people with ME/CFS who are able to work even a few hours a week can benefit from a way to maintain a connection to the larger world around them. Prioritise Your Health and Wellbeing Up Be realistic about whether you can safely work right now given your family obligations and illness severity. When we are unwell with ME/CFS, we need to avoid pushing ourselves and triggering post-exertional malaise, as this approach gives your body the best chance to improve. Many of us must remain focused on our basic activities of daily living. It is important to prioritise this over work, because work is only one aspect that gives us quality of life. Be conscious of your limits and be kind to yourself as you work through these considerations. What to do when you become unwell Up When you first develop ME/CFS or Long Covid or enter a period of more significant illness than usual, it’s important to look after yourself and learn to manage your symptoms. You may want to “push through” and try to maintain the same level of activity, but this can lead to a worsening of symptoms and delay recovery. Where possible, discuss leave options and a gradual return-to-work plan with your health provider and employer. Taking time off work in the initial stages of illness followed by a gradual return to work may help support long-term stability and symptom management. If your GP is in the Christchurch area, reach out to Here Toitū who are a part of Pegasus Health. They provide a Responding Early Service to support you if you may lose your job because of a health condition. Once you have had time to recover and adjust, it is ideal to return to work gradually rather than all at once. The goal of resting and pacing your return to work is to achieve a maintenance phase, where you can consistently manage your hours and work demands. Keep in mind that this may look different than you are used to. You may need to reduce your hours or take advantage of possible workplace accommodations to make work maintainable for you going forward. Unfortunately, we all know that achieving stability doesn’t mean you will never be unwell again. ME/CFS and Long Covid can be episodic in nature, requiring multiple periods of time off or ongoing adjustments to workplace support and personal symptom management. Because of this, it is important to identify how much you’d like to disclose to your workplace, when to tell them, and what you could gain from doing so. Ideally, a collaborative and supportive relationship with your employer around your disability allows you to maintain work effectively, and your employer to access your full value as an employee. Deciding whether to disclose a disability or health condition at work is a personal choice. Factors such as workplace culture, the nature of your role, and whether accommodations are required may influence your decision. Some people choose to disclose early, while others wait until support is needed. Workplace Accommodations Up If you do share your situation with your employer, they may be legally required to provide you with reasonable accommodations . These are adjustments that can be made in the workplace without causing significant disruption for the employer, that would allow you to participate to your fullest ability. Some accommodations that may benefit people with ME/CFS are: Flexible work hours Part-time work options The option to work from home where reasonable Written or recorded instructions, meeting notes etc The option to work seated The opportunity to rest during work breaks Mobility aids or assistive devices Accessible bathrooms and bathroom breaks A quiet workplace, or noise-cancelling headphones or earplugs Improved ventilation, open windows, or reduction of scented products in the workspace Allowing the employee to wear a mask of their choosing in the workplace to help reduce instances of sickness See our December 2024 newsletter for more information on potential accommodations and navigating a career with ME/CFS or long covid. Employment Law for Health and Disability Up While discrimination based on disability is unlawful in New Zealand, we know it does still happen. New Zealand employment and human rights legislation provides protections against disability discrimination and supports the right of disabled people to participate in employment on an equal basis with others. Understanding these protections can help you advocate for yourself and access support when needed. Whaikaha (The Ministry of Disabled People) has created a summary of your rights here . This is based on several acts and codes defining the rights of disabled people in New Zealand law, including: Health and Safety at Work Act 2015 | New Zealand Legislation Health and Disability Services (Safety) Act 2001 | New Zealand Legislation Health and Disability Commissioner (Code of Health and Disability Services Consumers' Rights) Regulations 1996 | New Zealand Legislation Human Rights Act 1993 | New Zealand Legislation If your rights have been breached and you are unable to resolve this directly with your workplace, you can seek free legal advice and advocacy from Aotearoa Disability Law . Additionally, you can make a complaint to the Human Rights Commission , who provide free information and dispute resolution services. Finding and Exploring Work Options Up Workplaces When searching for work, finding supportive and accessible workplaces is difficult but incredibly important. Certain workplaces will have visual displays to indicate their commitment to supporting their disabled employees. Sunflower symbols from Hidden Disabilities Sunflower indicates that a business or workplace has taken steps to improve awareness of hidden disabilities and may be more receptive to discussions about accessibility and support needs. Businesses participating in the Hāpai Access card programme may also be more understanding of those with disabilities. According to Hāpai card user submissions to the Hāpai card website, 310 organisations and businesses are now onboard with the Hāpai card. The Accessibility Tick Program supports workplaces and organisations to be more accessible and inclusive spaces for disabled community members. They offer a programme to organisations to become more accessible and equitable. When an organisation reaches the end of their journey they are awarded with an Accessibility Tick. List of organisations involved with the program are on the Accessibility Tick website . If you are already receiving a main benefit from Work and Income, such as Jobseeker Support or the Supported Living Payment, you can access a range of employment services free of charge. Workbridge , for example, can provide free support to connect you with disability-friendly employers. Also, if you are receiving a benefit from MSD and your GP is based in the Canterbury region, reach out to Here Toitū who are a part of Pegasus Health. They may be able to support you to explore training and work options. Home Business Options Sometimes going out and working isn’t an option and other avenues may need to be explored. Your skillset may allow you to work from home as a freelancer or run your own small business. Before exploring the idea of an at home business it is important to consider potential drawbacks: Inconsistent or insecure income Comparatively limited social interaction No sick days or annual leave Keeping track of and reporting income to Inland Revenue adds to your workload Blurred separation between work and home If a home business is right for you, there are several options to consider: Freelancing, such as writing, IT and web design, accounting and more can be advertised through sites like Zealancer and Unicorn Factory Arts and crafts Baking In-home beauty services Paid surveys Pet sitting/Plant sitting/House sitting Reselling goods on TradeMe or Facebook Marketplace

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

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

A brief introduction to Myalgic Encephalomyelitis / Chronic Fatigue Syndrome < Back ME/CFS a Brief Introduction 19 Jan 2026 A brief introduction to Myalgic Encephalomyelitis / Chronic Fatigue Syndrome View our carousel post on facebook ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) A Brief Introduction: Living with ME/CFS can be described as a profound, life-altering shift in how a person can exist in their own body. This debilitating impact is due to a broken energy system and dysfunction at a cellular level. Unfortunately, many people with Long COVID have the same experience. ME/CFS can be triggered in a few different ways; an infection (often viral), injury, surgery or other stressor. Recently there has been a huge increase in people with ME/CFS due to the Covid 19 Pandemic. Following infection, some people have developed Long COVID and now meet the diagnostic criteria for ME/CFS. The diagnostic criteria for ME/CFS gives some insight into the lived experience: ✦ Exhaustion: A body that feels “used up” by the smallest effort. It’s exhaustion that rest doesn’t fix. ✦ Post-Exertional Malaise (PEM): This is the crash that comes after physical, mental and other exertion. The crash might arrive hours after (say) a social event, or on the next day or two. Bed rest is likely needed after a PEM crash. ✦ Sleep issues: This can be needing to sleep a lot through to never waking up feeling refreshed. ✦ Cognitive dysfunction: “brain fog” that isn’t just fog. It's being unable to process information or recall things, and more. ✦ Orthostatic Intolerance: It’s feeling worse when moving to an upright position. Standing in a queue, in the shower, or at the kitchen sink, is problematic. Many other symptoms may be involved, such as pain, gut problems, and sensitivity to light, sound, smells. ME/CFS patients are categorised into four severities based on functional capacity. MILD | MODERATE | SEVERE | VERY SEVERE ✦ Mild - At least 50% reduction in pre-illness activity level. ✦ Moderate - Mostly housebound. ✦ Severe - Mostly bedridden. ✦ Very severe - Totally bedbound and in need of care for basic functions. STOP | REST | PACE Energy and activity management to balance activity and rest is the most important part of ME/CFS management. The goal of pacing is to minimise Post-Exertional Malaise, rather than eliminate it. Previous Next

Recording of a seated Tai Chi session for people with ME/CFS is now available < Back Wanting to try out seated Tai Chi? 30 Mar 2026 Recording of a seated Tai Chi session for people with ME/CFS is now available JIngjing Jackson, an experienced Tai Chi instructor, is leading three seated tai chi sessions for MECFS Canterbury this year. This is the first session recorded on 2nd March 2026 and is 35 minutes long. Tai Chi is a well-recognised body-mind movement and healing therapy, Published western research suggests that Tai Chi may help with post-intervention fatigue, depression, and anxiety and may improve sleep quality and mental function. Tai Chi may be a useful practice when you live with ME/CFS. WARNING: People with ME/CFS need to manage any physical or orthostatic exertion carefully to avoid triggering post-exertional malaise. People with POTS (Postural Orthostatic Tachycardia Syndrome) also need to avoid exacerbating symptoms. When following the movements on the video, please participate safely, within your activity and health condition limits. A previous 'Introduction to Tai Chi' presentation and session by Jingjing is also available to watch https://youtu.be/NI_6gUMImqo Session 2 is scheduled online for 1st June 2026 and Session 3 is scheduled for 7th Sep 2026. Previous Next

As we approach World ME Day on 12th May, ANZMES have released a powerful national press statement < Back World ME Day - Press Statement from ANZMES 7 May 2026 As we approach World ME Day on 12th May, ANZMES have released a powerful national press statement As we approach World ME Day on 12 th May, ANZMES have released a powerful national press statement calling for people with ME/CFS to be taken seriously, in healthcare, in policy and in everyday life. This year’s theme “Take ME Seriously” reflects what our community has been saying for decades: ME/CFS is a complex, multi-system illness that requires recognition, accurate diagnosis and appropriate support. Thousands of New Zealanders are living with ME/CFS, many are facing barriers to care, understanding and support. This campaign is a call to change that to ensure people with ME/CFS are believed, supported and given access to the care they need. We encourage our community to take a moment to read and share this important release and join us in raising awareness this World ME Day. https://anzmes.org.nz/world-me-day/take-me-seriously-2026/ #TakeMESeriously #WorldMEDay #MECFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #EducateME Previous Next

#LightsLowForME creates a visible, low effort way for allies to show solidarity while honouring the often-invisible suffering of people with severe ME < Back Join our quiet act of solidarity for people with severe ME/CFS on 8th August 8pm 1 Aug 2025 #LightsLowForME creates a visible, low effort way for allies to show solidarity while honouring the often-invisible suffering of people with severe ME On August 8 at 8:00 PM, we invite you to join us in a quiet act of solidarity to symbolise the isolation and extreme light sensitivity experienced by people with Severe ME. #LightsLowForME creates a visible, low effort way for allies to show solidarity while honouring the often-invisible suffering of people with severe ME. Severe ME Day honours the 25% of people with #MyalgicEncephalomyelitis who are housebound or bedbound living with the most disabling form of this illness. Many live in quiet, darkened rooms, often unable to eat and requiring care to carry out daily activities. What to do?: At 8:00 PM on August 8, please join us and dim your lights or sit in darkness for a few moments of quiet reflection. If you wish to, take a photo of a candle, soft light or darkened space and share it to your social media. Or use our #LightsLowForME frame or images shared below. Share a quote or fact about Severe ME or use one of our post templates and caption examples. Remember to use the hashtags #LightsLowForME #SevereMEDay and #RememberTheUnseen to quietly show your support. Image Frame: Apply our #LightsLowForME frame to your photo... https://www.canva.com/design/DAGux3PkxTg/p3cun_KzlKxQSH9vhu2KNQ/view?utm_content=DAGux3PkxTg&utm_campaign=designshare&utm_medium=link&utm_source=publishsharelink&mode=preview Downloadable Images: Post one of our images... https://www.canva.com/design/DAGuzF_JT6o/geIqr1l1LTL_b_eb9DBrOQ/view?utm_content=DAGuzF_JT6o&utm_campaign=designshare&utm_medium=link&utm_source=publishsharelink&mode=preview Caption Example 1: I’m turning my #LightLowFor ME this Severe ME Day in solidarity with those forced to live in silence in darkened rooms. #SevereMEDay #RememberTheUnseen Caption Example 2: Tonight at 8:00 PM, I turned my #LightsLowForME for those who live in darkness. Not by choice, but because their bodies cannot tolerate light, sound or touch. Severe ME is a devastating illness, often rendering people bedbound, unable to speak, eat, or even tolerate gentle light. This is for them. We see you. We honour you. #SevereMEDay . We particularly encourage mildly affected followers if they have capacity and allies to carry this message forward. Your participation amplifies the realities of those who don’t have a voice and can't be seen or heard right now in quiet solidarity. For more information about Severe ME: https://www.mecfscanterbury.nz/severity https://anzmes.org.nz/severe-me-day-remembering-the-unseen/ Previous Next

We exist to improve the wellbeing of people and whānau affected by ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) and Long Covid in Canterbury and the West Coast. MECFS Canterbury provides free information, validation, clinical support, connection, practical support and advocacy. Welcome to ME CFS CANTERBURY Support, advocacy and education for people affected by Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Long Covid in Canterbury and West Coast What's happening? Upcoming Events We host a range of different events around our region, both online and in-person. Sometimes we invite expert speakers, other times we may have a topic for discussion. Every meeting is an opportunity to share information and to connect with other people who understand life with a chronic illness. READ MORE How we help Our services are available to people living with ME/CFS and Long Covid who live in Canterbury and the West Coast, and also to their whānau. We operate a Registered Nurse Service to provide support with diagnosis and management, a Volunteer Outreach Service to provide limited practical help, plus more. READ MORE Updates We share news relevant to our ME/CFS community and the people who support them. This may include latest research and management guidance, updates about our organisation, and news about other services and aids that may help to improve quality of life. READ MORE Who are we? We are a community health and clinical service organisation for people affected by the debilitating illness ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) and Long Covid. We exist to improve the wellbeing of people and whānau affected by ME/CFS in Canterbury and the West Coast by providing information, validation, clinical support, connection, practical support and advocacy. We also provide education and support to health professionals and the wider community to improve the quality of care available for those affected by ME/CFS. LEARN MORE ABOUT US 1985 2791 139 ~ 0.4% Year Established People with ME in Canterbury (*estimate) People with ME in West Coast (*estimate) *Conservative estimate of 4 people in 1000 have ME/CFS pre Covid-19 A slide introduction to ME/CFS 1/11 DISCLAIMER: MECFS Canterbury does not provide recommendations for any treatments for your particular situation on this website. Any advice, either explicit or implied, is not intended to replace the qualified medical advice that is necessary for each individual. Please discuss any lifestyle and treatment changes with your doctor first. MECFS Canterbury does not accept any responsibility for any treatment undertaken by readers of any content or for any error or omission in connection with an article or content published on this website.

What 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