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< Back New Guidance on ME/CFS for Canterbury GPs ​ 6 Dec 2019 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. MECFS Canterbury is excited to announce that the new CDHB (Canterbury District Health Board – now Te Whatu Ora Waitaha ) HealthPathway for ME/CFS is live - as of Friday, 29th November 2019! We have been working with the CDHB team over the last year on getting the content improved. 'HealthPathways' is a website that GPs log into to view best-practice advice for assessing and managing a wide range of health conditions and concerns. Each region /DHB has their own ‘copy’ of the system content, but the base content is provided by Canterbury. The old 'Chronic Fatigue Syndrome' Pathway has been completely rewritten. The new content is largely based on the information on the US Centers for Disease Control and Prevention site, as this is the most up-to-date and informative of the government sites around the world. (Check out www.cdc.gov/me-cfs/index.html if you haven’t already.) The new ‘Chronic Fatigue’ Pathway will help GPs to assess someone more thoroughly to confirm if they have ME/CFS, idiopathic chronic fatigue or perhaps other conditions that may have different treatment options. It also guides them to support people to manage their activity carefully. We have prepared a letter about this new information for you to take to your GP, next time you visit. We want GPs to know about the new HealthPathway so that they can support you better.” Letter re new CFS HealthPathway .pdf Download PDF • 129KB Previous Next

< 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

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

< Back Mayo Clinic releases new consensus clinical guidance for ME/CFS ​ 4 Sept 2021 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. The Mayo Clinic Proceedings publication is a premier peer-reviewed clinical journal for general and internal medicine, and is among the most widely read and highly cited scientific publications for physicians. The journal has recently published a consensus recommendation article "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management" by Lucinda Bateman et al (US ME/CFS Clinician Coalition). The lengthy article (14 pages + references) discusses diagnosis and management, and highlights: key biological impairments in ME/CFS. the need to identify/treat co-morbidities. why GET (Graded Exercise Therapy) is not recommended. the link to Long COVID. It is exciting that another leading health care publication is sharing up-to-date evidence based information about ME. Of note, this article cites research from exercise physiologist, Dr Lynette Hodges, Massey University, NZ. Author Dr. Lucinda Bateman notes, “There are many steps clinicians can take now to improve the health, function, and quality of life of people with ME/CFS, including those newly ill with ME/CFS following COVID-19. This guidance may also help Long COVID patients, even if they do not fully meet criteria for ME/CFS.” Please note that the medication section is based on the US environment, which has a large range of medications available and where clinicians are able to be more experimental with off-label prescriptions than in other countries such as NZ. For local guidance for NZ medical professionals, we recommend the NZ Doctor How to Treat: ME/CFS article. (Available https://m.e.awareness.nz/how-to-treat-mecfs .) Link: https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext Previous Next

Join us as a member We invite you to join us as a member (it is free): To access our full range of services, To receive our news in your inbox, and to support our work. If you have any questions, please do ask. ​ CONTACT US Please complete our membership form, either: Complete the membership form below, or ​ Print PDF and post

Why do we use the Godwit, the Kuaka? Our logo depicts a flying Kuaka, the godwit. These birds show incredible endurance and are recognised for their tenacity and perseverance. Every year, as winter approaches, the Kuaka fly north to the breeding grounds of Alaska, stopping off in Korea and Japan for a rest and some food on the way. On the return journey, as our summer approaches, they fly directly to New Zealand, a trip of endurance with no food, water, or rest; nearly 12,000 km non-stop. The Kuaka fly in flocks, with birds taking turns to lead and conserve their energy in the slipstream of others. Some banded birds have made that journey 20 times and some of them come to the Canterbury coast. The Kuaka arrive back at the Avon Heathcote Estuary every spring. In the face of an enormous challenge, the Kuaka brings a spirit of endurance and cooperation, and that is what makes the Kuaka an appropriate symbol for MECFS Canterbury. Riegan, A. (2011, September 9). Flight path of E7. Science Learning Hub Pokapū Akoranga Pūtaiao The Kuaka have been seen as birds of mystery: there is a saying: ‘Kua kite te kohanga kuaka?’, ‘Who has seen the nest of the kuaka?’. ​ The mystery of course was because the Kuaka makes their nests far away in Alaska. ​ There’s a parallel there with our experience with ME/CFS. The illness is as real as the Kuaka, but no one yet knows what is causing it. Hopefully one day, soon, the answer to the mystery will be as obvious as the location of the Kuaka’s nests is to us now. There’s another evocative saying about the kuaka that can inspire our community: ‘Ka ngau ki te turi kakao te paringa o te tai, e tika te rere o te kuaka’ ​ ‘The spinifex wanders along the beach like the incoming tide, the kuaka flies direct’. ​ The big spiny seed heads of the spinifex plant move along the beach like tumbleweeds, backwards and forwards at the whim of the wind. But the Kuaka make their own way, working with purpose and as a group to achieve something remarkable. Buller, W. L. (1967). Buller’s birds of New Zealand: A new edition of Sir Walter Lawry Buller’s a History of the birds of New Zealand. Whitcombe & Tombs. It’s said that when Pacific explorers saw the flocks of Kuaka flying so determinedly and seeing that they weren’t sea-birds, they knew that there must be land to the south. So, they set off, following the Kuaka flocks, and discovered Aotearoa. ​ We like to think that the scientists can be like those explorers, following the clues from people with ME/CFS, to make a great medical discovery.

Complaint Process We are committed to providing appropriate and considerate support and advocacy for people affected by ME/CFS and to providing a positive working environment for our staff. We encourage anyone to get in touch with us to let us know if anything has not gone well so that we can put things right and improve for the future. We welcome this feedback in the form of a formal complaint, or as informal comments. Our definition of a complaint: An expression of dissatisfaction from an individual or a group with the standard of support, service, actions, policy, or position of MECFS Canterbury, or our employees or volunteers. How to complain: In the first instance, please contact the person that the complaint relates to. If the matter cannot be resolved, or if you would prefer, please prepare a written description of your complaint, and send to the Manager, or if the complaint relates to the Manager, send to the Chairperson. You will find our email and postal addresses on the Contact Section of our website. What to include in your complaint: What went wrong When and where it happened Who was involved What you want from your complaint Your name, address, and contact details (telephone and/or email). Unless you wish to remain anonymous and accept that this will result in limitations on our investigation and response. You have the right to expect that: Complaints will be treated with appropriate confidentiality. Information will only be shared with people necessary to complete the investigation into the complaint and to determine our response. You will always be treated with respect. At any point, all parties have the right to have their whānau support and/or supervisors and/or advocate present in any meetings related to the complaint. What happens when you complain? The person you have raised the complaint with will discuss the complaint with you within two working days of them receiving the complaint. Please be aware that the majority of our team work part time, so there may be a delay in your complaint being received. All complaints are reported to the Manager within 24 hours of receipt. For matters involving the Manager, the complaint will be reported to the Chairperson. A formal investigation and response process will be initiated if you or the person contacted require it: We may be in touch again to ascertain further information or facts and are likely to contact any other people involved. We will tell you when we plan to come back to you with a response. An independent mediator will be engaged if needed. We will provide a full and formal response in person and/or by letter if this is appropriate or requested. Our response will detail findings of our investigation and state what actions and changes have been put in place. If the matter is significant, the complaint and response will be tabled at the next Committee meeting in a confidential manner. What happens if I am not satisfied? If we are unable to resolve your complaint, you may take your complaint to the Health and Disability Commissioner or Charities Services .

Group Meetings and 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 or gather to do an activity together. ​ VIEW CALENDAR Group Meetings ​ Our group meetings may have an educational, support or social focus for people affected by ME/CFS. These group meetings are an important opportunity to share information and enable connections with other people who understand life with a chronic illness. Non-members are welcome to attend. ​ Christchurch In-Person These are held on the last Wednesday of each month from 1pm to 3pm. A highlight for attendees is connecting afterwards from 2pm to 3pm with a cup of tea, and dairy and gluten free refreshments. We meet at the lovely Mary Potter Community Centre in St Albans. See Location Rangiora In-Person These are held on the third Wednesday of every second month from 1pm to 3pm. From 2pm to 3pm we have afternoon together, with dairy and gluten free options. We usually meet in The Skurr Centre, 156 Ashley Street, Rangiora Showgrounds, Rangiora. See Location Online Meeting (Zoom) These are held on the second Wednesday of each month from 12 noon to 1pm. See the event calendar below for more details. These online meetings can be a great option for people who are unable to attend the in-person meetings, for various reasons such as being bed-bound, house-bound, or living outside of Christchurch. ​ Register Online Education for Health Professionals We are able to facilitate and deliver education events for health professionals from time to time. Please get in touch if this is of interest. ​ CONTACT US Event Resources Following each event, we share information and summaries in our newsletter, by email to our members, and also in our Facebook group. This ensures that people who were interested but could not attend the event, can get familiar with the information. If a recording of an educational presentations was made, we share this on our YouTube channel, along with any handouts. ​ GO TO OUR YOUTUBE CHANNEL Events Calendar You may wish to follow us on Facebook or Meetup , or join us as a Member , to be notified of our upcoming events.

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Working with your Doctor Building a trusting relationship with your doctor is an important part of any illness management plan. This is especially the case when you have a complex and long-term illness like Myalgic Encephalomyelitis /Chronic Fatigue Syndrome and may also have other comorbidities. ME/CFS can be a challenging illness for doctors. They may not have received any training in ME/CFS, nor be aware of the current clinical guidance. Also, ME/CFS can present differently in each person and there are limited treatments available. This situation can lead to frustration for both the doctor and the patient. An informed GP with a good understanding of your situation, may be able to refer you to other health services and can provide medical evidence for a range of financial supports from Work and Income and information for employers. We have put together some tips that may help you to partner with your doctor, to share the lived experience, and to ensure that the doctor is aware of current and emerging evidence-informed practice. Open our 'Working with your Doctor' handout

Connect with Us Join Us Online Community Social Media Want to help? We invite you to join us as a member to access our full range of services , to receive our news in your inbox, and to support our advocacy and education work.​ ​ It is free* to become a member of MECFS Canterbury. (*We do welcome donations if that is an option for you) Please complete our membership form, either​: Join online or Print PDF and post Join Us: Our Events: You are warmly invited to join us at our various events. We have regular group meetings that may have an educational, support or social focus for people affected by ME/CFS. We are also involved in hosting education events for health professionals. For information about our upcoming events, including our support and education meetings, please visit our event calendar. Check our Events Our online peer support group is a private Facebook group that provides a local online community for people living with ME/CFS. It is a safe place to connect and share experiences and information. You are welcome to join us. Click on the Facebook icon to join us! Many of the people in our ME/CFS community live in isolation, with financial hardship, disability, and without appropriate support from the health and welfare systems. We need community-wide support to improve the quality of life of people affected by ME/CFS. ​ There are a variety of ways that you can help or join our team to make a difference. Check out our list of ways to help on our website: EXPLORE WAYS TO HELP Follow and connect with us on various platforms! Facebook Instagram Linked In MeetUp We invite you to check out recordings of our educational sessions on our YouTube channel. Have a question? Get in touch with us! CONTACT US