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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

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 2682 132 ~ 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.

Some people who have been infected with COVID-19 find that they have ongoing symptoms months afterwards. This chronic illness is sometimes referred to as Long COVID, Post-Acute COVID Syndrome (PACS), or Post-COVID-19 Syndrome. The symptoms of Long COVID may include: organ damage, the core symptoms of ME/CFS, (including fatigue, post-exertional malaise, brain fog) and other concerns. Long Covid and ME/CFS are both examples of a serious and debilitating condition that can follow any type of viral infections. There are some important differences that distinguish some people with Long COVID from those with ME/CFS. However, some people who have Long COVID can also be diagnosed with post-COVID ME/CFS. To explore this topic further in-depth we suggest the article published in Frontiers in Medicine in 2023, titled 'ME/CFS and Long COVID share similar symptoms and biological abnormalities: road map to the literature'. https://www.frontiersin.org/articles/10.3389/fmed.2023.1187163/full ME/CFS and Long COVID All services provided by MECFS Canterbury are available to people with Long Covid who are experiencing ME/CFS-like symptoms. Our Registered Nurse Service can partner with other health providers who are supporting people living with Long Covid. How we help PREVIOUS PAGE

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 Latest News 28 Oct 2021 NICE releases new guidance for ME/CFS 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. Read More 24 Oct 2021 Article in The Spinoff discussing support needed for people with long Covid Tom Harris, a member of MECFS Canterbury, writes for The Spinoff and asks ‘If you get long Covid, who’s going to help?’ Read More 4 Sept 2021 Mayo Clinic releases new consensus clinical guidance for ME/CFS The Mayo Clinic Proceedings publication has recently published a consensus recommendation article for ME/CFS written by the ME/CFS Clinician Coalition. It is exciting that another leading health care publication is sharing up-to-date evidence based information about ME/CFS. Read More 25 Jun 2021 New guidance from CDHB for physiotherapists 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. Read More 22 Dec 2020 New guidance for ME/CFS from CDHB for allied health professionals 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. Read More 10 Sept 2020 New public guidance from CDHB on ME/CFS Announcing updated information about Myalgic Encephalomyelitis /Chronic Fatigue Syndrome on the Healthinfo site for people living in Canterbury. This provides clear, reputable guidance from the CDHB about ME/CFS that will raise understanding and awareness. Read More 11 May 2020 ‘Years in Lockdown’ video for International ME Awareness Day, 12th May 2020 Many people living with ME/CFS live in permanent lockdown. When you move out of lockdown - and get back into a fulfilling life with a variety of choices and activities - we ask you to remember those that will stay in lockdown because they have ME/CFS. Read More 6 Dec 2019 New Guidance on ME/CFS for Canterbury GPs Canterbury District Health Board's diagnostic and management information for ME/CFS has now been updated with input from MECFS Canterbury. This provides GPs in the region with evidence-based guidance and best practice. Read More 6 Dec 2019 Christchurch chronic fatigue sufferer told it was all in her head Gillian Watson, an MECFS Canterbury member, recently sat down with Oliver Lewis from stuff.co.nz and detailed her experiences with the ME/CFS. Being told to keep pushing was detrimental. Read More