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The National Institute for Health and Care Excellence (NICE, UK) has today, Friday 29 October 2021, published the guideline for ME/CFS: diagnosis and management, after a robust 3 year review process. < Back NICE releases new guidance for ME/CFS 28 Oct 2021 The National Institute for Health and Care Excellence (NICE, UK) has today, Friday 29 October 2021, published the guideline for ME/CFS: diagnosis and management, after a robust 3 year review process. New NICE guideline creates hope - a paradigm shift in the care of people with #MEcfs Extracts from the Science for ME press release... "The National Institute for Health and Care Excellence (NICE, UK) has today, Friday 29 October 2021, published the guideline for #MyalgicEncephalomyelitis (or encephalopathy)/ #chronicfatiguesyndrome : diagnosis and management." "The guideline replaces the existing clinical guideline published in 2007 and aims to improve awareness and understanding about ME/CFS, provide guidance on when to suspect it (to enable earlier diagnosis), and includes recommendations on access to care, symptom management and care planning." "NICE staff and the members of the guideline committee have worked for over three years to carefully examine the evidence... The guideline is a publication of international significance, providing an example of good practice that will influence ME/CFS care around the world." - Including here in New Zealand. "The guideline makes it clear that graded exercise therapy (GET) should no longer be offered to people with ME/CFS, and that both cognitive behavioural therapy (CBT) and therapies based on physical activity are not curative. This is based on a review of the evidence, which rated the outcomes for studies of these interventions all of low or very low quality. This is a welcome and significant, evidence based change in approach from the 2007 ME/CFS guideline, in which CBT and GET were central to treatment. Link to the new NICE guidelines:  https://www.nice.org.uk/guidance/ng206 Previous Next

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

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

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

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

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.

Fundraise Do you have a birthday, anniversary, or other special occasion coming up? Or want to set yourself a physical challenge and participate in a running, cycling, swimming or triathlon event? Why not ask your whānau and networks to donate to MECFS Canterbury or sponsor your participation and raise some awareness at the same time? Want to host a fundraiser? Talk to us about setting up a fundraising page that links to MECFS Canterbury on sites such as Givealittle. First Name Last Name Email Message Thanks for your interest! Send Tshirts for fundraising events: If you are looking for tshirts that raise awareness of ME/CFS while you are doing your fundraising, we suggest you take a look at the range from M.E. Awareness NZ. SEE ALL M.E. AWARENESS NZ T SHIRTS

Work and Income Advocacy When we live with a debilitating chronic illness like ME/CFS, we may be unable to work to generate income for ourselves and our families. Depending on our family situation, other income and assets, there may be some income support available from Work and Income, a department of the Ministry of Social Development (MSD). We know it can be difficult working through the information and the application steps. We have summarised the income support available and how to access it on the Work and Income Assistance page in our Living with ME/CFS section of this website. You can also be connected to the advocates in our Work and Income Advocacy Service. They provide confidential support to people affected by ME/CFS and will help you to access any assistance that you are eligible for from Work and Income. This service is normally delivered through email, but it depends what suits you best - text, phone call, zoom call or home visits are also an option. The support may include: Helping to determine your eligibility for the different financial benefits and allowances. Assisting in filling out paperwork and applications. With your permission, acting on your behalf as your agent. Working with your GP to ensure any required medical certificates reflect the severity and impacts of your illness. Supporting you through issues with Work and Income. Advocating on your behalf with Work and Income. To access our Work and Income Advocacy Service: Please be aware that our services are only available to people affected by ME/CFS or Long Covid, or those who are currently exploring this diagnosis. If that is not you, please contact Beneficiary Advisory Services in Christchurch (800 000 043 or office@bas.org.nz ) or find your local service on the Community Law website. To refer yourself to our Work and Income Advocacy Service for people affected by ME/CFS, sign up as a member and note on the form what help would be beneficial, and one of our team will be in touch. FILL OUT OUR MEMBERSHIP FORM CONTACT US If you are already a member, send us an email about the help you are needing.

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.

Sponsorship If your business or organisation is interested in supporting people living with ME/CFS, we would love to hear from you. There are opportunities to make a difference by sponsoring an event, service area, operational costs, funding key positions, and more. First Name Last Name Email Message Thanks for submitting! Send What to know more about us, our community, and our work? Review our introduction documents: Statistics Snapshot . Introduction to our Services and Community Needs . Testimonies and Service Statistics . Watch our 3-minute introductory video for potential funders...

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

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