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About MECFS Canterbury Our Vision and Mission Our Organisation Meet our Team Why the Kuaka? Testimonials Our Partners Complaints & Feedback

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. < Back New public guidance from CDHB on ME/CFS 10 Sept 2020 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. Announced today! Updated information about Myalgic Encephalomyelitis /Chronic Fatigue Syndrome on the Healthinfo site for people living in Canterbury. MECFS Canterbury was proud to assist the CDHB with the update of this info. The content on HealthInfo provides clear, reputable information that people with ME/CFS can refer to for themselves, and also share with their friends, whānau and workplaces to raise awareness and understanding. It reflects the content on the HealthPathways platform and outlines the symptoms of ME/CFS, diagnosis method, self-care suggestions, treatments, and other supports available. To view, visit: www.healthinfo.org.nz/Chronic-fatigue-syndrome-CFS.htm Alternatively, view the Home page of the Healthinfo site at www.healthinfo.org.nz and use the search box at the top right to find the 'ME/CFS' topics. "HealthInfo is a health information website for the general public, funded by the Canterbury District Health Board. The information on HealthInfo is specific to Canterbury, New Zealand. It's written and approved by local ... healthcare professionals." "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." "When you read information on HealthInfo, you can feel confident that this is the information your medical professional wants you to read." Previous Next

Registered Nurse Service Our Registered Nurses provide a range of clinical supports for our members and their whanau. A Nurse can also talk to your health team, education provider and workplace, to improve understanding and to discuss care and accommodations. The Registered Nurse Service is free and is delivered through home visits, zoom consultations, and other interactions to people of all ages. An initial assessment involves discussing your previous medical history, your current situation and what ongoing supports you may need. Areas of support may include: Clinical support for symptom management and obtaining a diagnosis. Short term loan of a wearable activity tracker, to help monitor the impact of your activity on your symptoms, and to assist you to pace within your energy envelope. Advocacy with GP’s, Physicians, allied health, employers, education providers, whānau and others. Management plans for students attending the Southern Regional Health School. (SRHS is a state school for children in Years 1 to 13 who are unwell.) Referrals to allied health and other external supportive services (including CDHB Occupational Therapy, CDHB LTS-CHC (Long Term Support – Chronic Health Conditions), Pegasus Health PCW (Partnership Community Workers), Comcare – Peer Support, Total Mobility Card) Applications for the Hāpai Access Card which give people with disabilities better access and support from retailers and public areas. Due to funding constraints, our Registered Nurse Service is only available to people who have or suspect they have ME/CFS or Long Covid in the Canterbury and West Coast regions. The exception to this is for young people from throughout the South Island who attend the Southern Regional Health School. Please note that there is currently a waiting list for our Registered Nurse Service and you may need to wait for several months before receiving first contact from a nurse. We apologise for this and assure you that we are working hard to increase the funding for our services. To access this service: To refer yourself to the Registered Nurse Service, sign up as a member and note on the form what help would be beneficial, and one of our team will be in touch. Existing members can email us to request a referral to the Registered Nurse Service. FILL OUT OUR MEMBERSHIP FORM OR ASK YOUR GP TO FILL OUT THE REFERRAL FORM Our Registered Nurse team is also available to provide general information about ME/CFS to medical professionals and community-based service providers.

About ME/CFS Myalgic Encephalomyelitis /Chronic Fatigue Syndrome WHAT IS ME/CFS GETTING DIAGNOSED DIAGNOSTIC CRITERIA SEVERITY ME/CFS AND LONG COVID

Volunteer Our volunteer team makes a huge difference to the support and services that we can offer people impacted by ME/CFS. We have volunteers who visit clients to provide practical supports such as housework and gardening tasks, walking dogs, assisting with filling forms and IT issues. Other people write articles for our newsletter or assist with our events and services in other ways. To sign up as a volunteer: We often have specific vacancies listed on the Volunteer Canterbury website for you to browse through. VIEW OUR VOLUNTEER VACANCIES ON VOLCAN Alternatively, please fill out our ‘Volunteer Expression of Interest’ form. We will be able to match you with people in need based on your location and the tasks you are willing to help with. FILL OUT OUR VOLUNTEER FORM For existing volunteers: After each client visit, please use the Outreach Event Form linked to below, to let us know what support was provided and when. There is also space to indicate future plans and to provide feedback. Remember to bookmark the website address so it can be found easily after each visit. Thank you for being involved in such a practical way with our community! COMPLETE OUTREACH EVENT FORM

Newsletters In 2024, our newsletter will have been published for 39 years! Currently, there are six issues each year in February, April, June, August, October and December. The newsletter contains updates on the activities of the organisation, information about managing and living with ME/CFS, latest research, plus more. We welcome contributions. Members can elect to receive the newsletter by post and / or by email. VIEW PAST ISSUES SEND US A CONTRIBUTION

Our Kaupapa Our Vision – Tā Mātou Aronga That every person with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Long COVID in Canterbury and the West Coast lives the best quality of life possible Our Mission – Tā Mātou Whainga To improve the wellbeing of people, families and carers affected by ME/CFS and Long COVID by providing information, validation, clinical support, connection, practical support and advocacy. To improve the quality of care available for those affected by ME/CFS and Long COVID by providing education, direction, and support to health professionals and the wider community. Our Values - Ā Mātou Uaratanga Compassion We show compassion to every person affected by ME/CFS, including family and whānau.  Respect We foster partnerships based on mutual trust, treat every person with dignity and always maintain confidentiality.  Equity We are committed to removing health inequities and barriers.  Patient-centred We support our community with services and information based on evidence and experience, assisting each individual to design supports & management protocols that work for them.   Collaboration We work together constructively and creatively recognising each other's strengths, and those of other organisations, to get the best outcomes for our community.  We acknowledge Te Tiriti o Waitangi as a founding document in New Zealand and demonstrate a commitment and special obligation to its principles. 

Help a friend with ME/CFS If you know someone who lives with ME/CFS, your help and support can make an important difference to their lives. Ask them what would make things easier for them, and what support they would like. Perhaps prepare a meal, provide quiet company, help with housework or maintenance, or pay a bill. If you invite them to an event, consider how to reduce the energy required of them, provide a quiet space to rest, and be aware that they may need to cancel on the day if they are too unwell. Believe them. Learn about their experience and the illness. Remember to manage the support you give around your own needs. Possible next steps: Support your friend to join us so that they can receive our services. FILL OUT OUR MEMBERSHIP FORM Have any questions? Please reach out to us. CONTACT US Guidance for hosting and gifts:

Library Our library of books and limited equipment is available to members free of charge. The books in our library have been selected or donated by past and current members and supporters of MECFS Canterbury. Please note that it is not our role to endorse all books or all content of each book. CLICK TO VIEW ONLINE CATALOGUE The library includes books on evidence-based management of ME/CFS and other approaches, books about coping with long term chronic illness, and fiction related to ME/CFS as well. You can visit the library in person, but most people request that we post items out to them. We can provide you with a post paid courier bag for returning the books, and when you are ready to return the items, we can arrange for NZ Post to pick up from your home. Our Recommendations For those new to ME/CFS we recommend books by Dr Rosamund Vallings, Dr Charles Shepherd, and Dr David Bell. In particular: 'Chronic Fatigue Syndrome M.E. - Symptoms Diagnosis Management' by Dr Rosamund Vallings CLICK TO VIEW IN CATALOGUE For in-depth clinical guidance, we recommend: 'ME/CFS/PVFS An explanation of the Key Clinical Issues' by Dr Charles Shephard and updated regularly by the ME Association UK CLICK TO VIEW IN CATALOGUE Please seek medical advice: Any suggestions or advice given in any of the books in our library, should not replace medical advice, and we do not accept any responsibility for any treatment undertaken. Please discuss with your GP or health care team any changes to your treatment regime before implementing them, including the severity of your illness and any other health issues. We are all different, and unfortunately, what works for one person may not work for another. It is best to be careful. Can't find the book you want to read? Let us know if you would like us to get a book in, and we will do our best to purchase it for the library. First Name Last Name Email Message Thanks for your query! Send

Contact Form: First Name Last Name Email Phone Topics Tell us what you need help with SEND Thanks for query. We’ll get back to you shortly. Our Contact Details: For any enquiries, please contact us via the form above, or by email, text, or phone. Email: info@mecfscanterbury.nz Text: 020 4027 0176 Phone: 03 365 5887 Postal address: PO Box 10090, Phillipstown, Christchurch 8145 Our Office: Please ring to make a time to visit. The office is not always open as we are a part-time team, and often have appointments outside the office. Our office is located at: 71 Orbell St, Sydenham, Christchurch 8023 There is onsite carparking. Use park #7 or #8, or one of the visitor carparks. Christchurch Venue: Our monthly Christchurch in-person meetings are held at the lovely Mary Potter Community Centre. Address: 442 Durham St North, St Albans, Christchurch 8014 This venue is just north of Bealey Avenue and has 30 onsite carparks. It also has comfortable lounge chairs and padded seats, and a beautiful garden. To get familiar with the centre before you arrive, you may like to watch the centre’s walkthrough video. Rangiora Venue: Our Rangiora in-person meetings are currently held at The Skurr Centre. Address: 156 Ashley Street, Rangiora Showgrounds, Rangiora This venue has onsite carparks. Our Meeting Venues: Timaru Venue: Our Timaru in-person meetings are held at the Timaru Library, Community Room. Address: 56 Sophia St, Timaru. Hokitika Venue: Our Hokitka in-person meetings are held at WestREAP. Address: 72 Tudor Street, Hokitika. Other Venues: We use other venues from time to time. Please check the event listing to confirm venue location. Join us: To receive support and /or information about ME/CFS from us on a regular basis, please sign up as a member (it is free). Please complete our membership form, either: Join online or Print PDF and post

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 .

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. < 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