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There are a range of practical supports that may make a difference for you when living with a chronic illness like Look for ways to save energy or to get support with your activities of daily living. Practical Supports There are a range of practical supports that may make a difference for you when living with a chronic illness. Look for ways to save energy or to get support with your activities of daily living. We hope to grow this list over time. Please let us know if you have any suggestions of what could be included in this section. Energy Saving Devices When living with an energy limiting illness, using devices and aids that make everyday tasks easier can make a real difference. Think about the tasks that you can't do without getting sicker, or that you avoid doing, and check out if there is equipment or an aid to make this easier. Some examples of devices and aids that people tell us have made a difference: Dishwasher Robot vacuum cleaner Electric toothbrush Slow cooker Sensory aids such as earplugs, tinted glasses. Find manpower! e.g. someone to mow your lawn or do basic housework once a month. Mobility and Home Aids It is worth considering using mobility aids such as wheelchairs, canes, walkers, shower stools, to help conserve your energy. This is particularly the case if you experience orthostatic intolerance (symptoms when moving to an upright or standing position). Talk to your GP about being referred for an assessment with an Occupational Therapist, or purchase your own. We also have some equipment available to borrow. Mobility Parking Permit People with ME/CFS are often unable to walk much distance or are bed-ridden after an outing. Consider applying for a Mobility Parking Permit so that you can park in the mobility parking spaces outside shops, parks and other locations. It means you don’t have to walk so far during outings and will have more energy for the shopping or whatever you need to do. Please ask your GP or one of our nurses to complete the application form from CCS Disability Action . The cost for a 5-year permit is $50. To help you plan an outing, the Christchurch City Council has a map of where the mobility carparks are. Total Mobility Discounted Transport Scheme People with ME/CFS are entitled to discounts that give them 75% off fares with approved transport operators - up to a maximum of $70 per trip. You can also use the Total Mobility card to get 50% discount on Metro bus fares too. As at June 2024, the Total Mobility scheme is available through the following participating transport operators: Greater Christchurch - Christchurch Mobility Transfers. Blue Star Taxis, Driving Miss Daisy, First Direct, Freedom Companion Driving Services NZ Ltd (ChCh North and Rolleston), Gold Band Taxis, NZ Total Care Mobility Ltd Ashburton - Ashburton Taxis Timaru - Geraldine Community Minibus Trust, Timaru Taxis, Driving Miss Daisy Waimate - Waimate Community Vehicle Trust Applications can be made through Aspire Canterbury ($34 per annum) or talk with one of our nurses to apply through Aged Concern (one off $30 fee). Your GP or one of our nurses can sign the application form. For more info, see: Environment Canterbury Total Mobility Scheme . Total Mobility on Metro buses in Christchurch and Timaru. Online Grocery Shopping You might find that it is worth taking the time to get familiar with ordering groceries online so that they are delivered to your home or made ready for pickup at the supermarket. It saves a lot of energy and may help you to manage the rest of your week. For more information about the services and costs of online shopping see the up-to-date information from the stores: Woolworths - Pickup or Delivery Pak'nSave - Pickup only New World - Click and Collect or Delivery Fresh Choice - Pickup or Delivery at selected stores Hāpai Access Card This card is for the disabled community and it's aim is to provide the cardholder with empathetic customer service from businesses, cafes and attractions involved with the programme. Your card will indicate what barriers you may face when engaging with the community. For example, it may indicate that you cannot stand in a queue, so when you show your card they will invite you to the front. The card also provides discounts in some retail and council settings. The Hāpai Access Card costs $30 for 3 years. People can self-refer for the card and need to provide evidence of needs. Our Registered Nurse Service can also complete an application for you. Hidden Disabilities Sunflower Lanyard The sunflower is a globally recognised symbol for non-visible disabilities. Wearing a sunflower lanyard lets airport staff know that you may need a little extra help or understanding when travelling. Other businesses, such as ASB, recognise the lanyard. Please bear in mind that a sunflower lanyard will not get you through queues faster or provide a personal escort or wheelchair through airports. Talk to your airline about special assistance or the use of a wheelchair while at the airport. The Sunflower Lanyard Facilities at Christchurch Airport include lower sensory bathrooms, information desks, a quiet pod, and a quiet seating area. We normally have supplies of the Sunflower Lanyards provided by Christchurch Airport or you can order directly from them.

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

When considering what supplements and treatments might be beneficial, we can refer to expert ME/CFS clinicians around the world and anecdotal evidence from the ME/CFS community, along with what published research there is. But care must be taken to always consider the individual, the risk of harm, and to approach any new treatment safely. We offer some guidelines for this. Supplements and Treatments In a perfect world, it would be understood what each of our bodies need to enable improvement and recovery. In this future world, there will be duplicated, published peer-reviewed clinical trials to back up any treatment recommendations that might be made. There would also be medical professionals who are knowledgeable in assessing each person's health and who have the expertise to manage symptoms and monitor treatments. We certainly aren’t there yet. Right now, when considering what supplements and treatments might be beneficial, we can refer to expert ME/CFS clinicians around the world and anecdotal evidence from the ME/CFS community, along with what published research there is. But care must be taken to always consider the individual, the risk of harm, and to approach any new treatment safely. We offer some guidelines for this below. 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 Lived Experience Tells Us From decades of people with ME/CFS and their doctors sharing what may help, we can make these points: Pacing our activity and energy expenditure, and including rest periods in each day, seems to be the best treatment protocol to manage symptoms and improve quality of life. Managing stress and calming the parasympathetic system through relaxation therapies often helps. People often report a supplement may be helpful for a period of time, but then it loses its impact. That initial period of respite may still be of high value. Stopping and then starting again may restart effectiveness. Supplements and therapies can cost a lot – at a time when we are likely to have limited financial resources. Given many treatments do not have evidence to support their use, will not work for every individual, or not for long, it can be difficult justifying investing in them. Purchasing a mobility aid or hiring a cleaner to help pacing, may achieve more. It is likely that there are subtypes of ME/CFS, and these may require different treatment pathways. People are often diagnosed with ME/CFS when a differential diagnosis or comorbid condition should have been identified. e.g. EDS, MS. The Risk of Harm Some supplements, treatments and therapies can DO HARM: While “natural” medicines and conventional pharmaceuticals can be helpful, they can also be contraindicated or dangerous if you have other diagnoses or are on other medication. Examples: Did you know that anecdotally, even basic supplements like magnesium, vitamin D and C can have negative health effects? Did you know that an estimated 1 in 250 people in NZ are at risk of developing hereditary haemochromatosis (toxic iron overload) so should never take iron supplements? People with ME/CFS can be very sensitive to supplements and vitamins, so their response cannot be assumed or judged from the experience of others with ME/CFS, or the general public. Fillers in supplements (as an example, mag stearate) can affect people with ME/CFS badly. Stimulants may seem an intuitive choice, but they frequently backfire in ME/CFS, leading to a very brief boost followed by a crash. Some Neuro-linguistic programming (NLP) therapies encourage people to exceed their energy envelope and risk pushing people with ME/CFS into a more severe symptom level. Graded Exercise Therapy (GET) is contraindicated, and is harmful when exercise is increased and triggers PEM.. Guidelines for Introducing Something New We recommend that you consult with your GP before starting new treatments. Add only one supplement change at a time, so that it is easier to verify what is helping or not. Start supplements on extremely low doses, because many people with ME/CFS are hypersensitive. Stop supplements/treatment if any negative reactions/symptoms are experienced (please check with your GP if this needs to be done gradually) Monitor the use of supplements extremely carefully. Keep a journal prior to starting – it is so easy to miss or over-inflate impacts. Trial for 2 – 3 months. If unsure whether it is helping, stop for a period (in a way that is safe to do) and monitor any changes. Start Low. Go Slow. Keep a record. Potential Supplements and Medications This is a list of potential supplements that some ME/CFS patients can tolerate and have sometimes found helpful. Unfortunately, this does not mean they will be good or helpful for you. PLEASE talk to your doctor and refer to the risks and approach guidelines above before trailing. Vitamin D - for those housebound and don’t get enough sun, preferably after a vitamin D test. Magnesium malate - in evening for insomnia, but some forms can disturb sleep and bowels. Lypospheric Vitamin C or the cheaper standard Vitamin C - for immune support. Vitamin B12 and B multi - for brain fog and fatigue (supplements are considered less effective than injections). Refer to our B12 information leaflet . Electrolytes – for those with Orthostatic Intolerance symptoms. Extra salt can be a good alternative, unless you have high blood pressure. Your GP can prescribe Electral. Gut health tonic - for digestive issues. Iron - only when deficiency has been confirmed by a blood test. Co-Q10 - some people have found this effective for mitochondrial support. NAC (N-acetylecysteine) – enhances mitochondrial support. Antihistamines – particularly if signs of MCAS, Mast Cell Activation Syndrome. Melatonin slow release – for sleep support. Horopito therapeutics - for systemic Candida. Low Dose Naltrexone (LDN) – evidence for pain support, emerging evidence for fatigue support. Used 'off-label' in New Zealand. Refer to our LDN leaflet . Evening primrose oil - may be helpful in relieving joint pain. Mestinon (pyridostigmine bromide) - emerging evidence for supporting aerobic capacity, fatigue, muscle strength and mental clarity. Used 'off-label' in New Zealand. Refer to our Mestinon leaflet . Refer to our further reading list for more information about these recommendations. Potential Therapies This is a list of potential therapies that some ME/CFS patients have found helpful. Unfortunately, this does not mean they will be good or helpful for you. PLEASE talk to your health team and refer to the risks and safe approaches suggested in our guidelines above before trailing. Vagus Nerve Stimulation (VNS ) - calming the Sympathetic Nervous System (SNS), the fight /flight response in the Autonomic Nervous System (ANS). Breathing Techniques such as 4-7-8 breath - for calming your ANS. Also see our Mental Wellbeing section for relaxation therapies. Further Reading Clinical Care Guide from Bateman Horne Centre, USA, a 98 page document published 2025. Clinical Primer from IACFSME (International [Clinician] Association for CFS/ME), 2014. Particularly Section 5 Management and Treatment. List (crowd-sourced) of supplements & considerations for pwME including what research exists https://me-pedia.org/wiki/MEpedia:Contents#Herbs.2C_supplements_and_nutraceuticals Statement from M.E. Awareness NZ on alternative medicine and therapy programmes https://m.e.awareness.nz/position-statements Advice from ME Association UK, who are strongly evidence-based. They provide general guidance and leaflets covering various supplements, therapies and medications https://meassociation.org.uk/free-literature-downloads/ There are supplement recommendations in Dr Sarah Myhill’s book about ME, “It’s Mitochondria not hypochondria” (we have a copy in our library). Again, no researched evidence on these, just anecdotal evidence. Visit our Links page for more information.

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

Buy from us 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 Trade Me store We sell a range of donated and fundraiser items on TradeMe, thanks to donors and volunteers. You may find something of use to you? VIEW OUR TRADEME LISTINGS ME/CFS Awareness Pins Wearing an enamel pin can be a great way to start a conversation about ME/CFS, to talk about the work of our charity, or to share some of your journey with the illness. We have three styles available to be worn at any time, but particularly around World ME Day on 12th May each year. Order from our office. Cost is $5 per pin and to post out to you. Our bank account is with Westpac 03-0802-0060232-000. Our legal name is 'ME/CFS Canterbury / West Coast Charitable Trust'. Blue Ribbon awareness Pin Forget Me Not single flower Pin Forget Me Not flower cluster Pin

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

#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

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

The 4th International Conference on ME/CFS, Long Covid and Gulf War Illness < Back ME CFS Canterbury Registered Nurses attend RID2025 11 Nov 2025 The 4th International Conference on ME/CFS, Long Covid and Gulf War Illness Our nurses Amanda Wyatt and Wendy Dragt are currently attending #RID2025 – Hosted by Griffith University NCNED it is the 4th International Conference on ME/CFS, Long Covid and Gulf War Illness in Tweed Heads, Australia. The program features leading researchers like Professor Nancy Klimas speaking about immune and viral factors in ME/CFS, Professor Maureen Hanson on plasma proteomics, Professor Sonya Marshall-Gradisnik on TRPM3 ion channel dysfunction, and Professor Warren Tate talking about epigenetic mechanisms. Also presenting are Dr Natalie Eaton-Fitch on ME/CFS and Long Covid epidemiology, Dr Jessica Maya on inflammatory subgroups, and Professor Pete Smith on autonomic and immune links plus many more. It’s an inspiring opportunity for our nurses to hear the latest biomedical research and clinical insights, and to connect with others working to improve care for people with ME/CFS and Long Covid. #myalgicencephalomyelitis #mecfs #LongCOVID   Previous Next

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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