ANZMES (Associated NZ ME Society Inc.)

As the National Advisory on ME, ANZMES, before Christmas 2023, sent Best Practice guidance to medical schools, associations, health bodies and councils for adoption. You can view that guidance here: https://lnkd.in/gsxHxq3U This document was supported by national and international ME/CFS clinicians, researchers, and organisations. #bestpractice #internationalguidelines #MyalgicEncephalomyelitis #chronicfatiguesyndrome #longcovid #DisabilityDenial #worldmealliance #solveme #MEAssociation #emergeaustralia #complexchronicillnesssupport #MEAwareness #MeSupport #restassuredrespitetrust #mecfscanterbury #MECFS

Have you registered to listen in to this fascinating conversation between Dr Peter Rowe and Emily Taylor? Tuesday, September 10, 2024 12-1 pm PT / 3-4 pm ET / 8-9 pm BST / 9-10 pm CEST. Dr Rowe's new book could be a lifeline to many, make sure you hear directly from him in this one-off opportunity. Register here: https://buff.ly/3Z3JPGX Or find out more on the Solve M.E. website: https://lnkd.in/e5_XDwQ3 #POTS #MECFS #MyalgicEncephalomyelitis #OrthostaticIntolerance

Our condolences to Francis' family and friends. Francis was a character. He loved to explain things thoroughly during our meetings. We'll miss his passion and dedication for pwME. His contributions to the European ME Coalition and to World ME Alliance will live on. This is very sad news indeed and a big loss.

ANZMES (the National Advisory on ME/CFS and a RNZCGP registered provider of continuing education) has released a short reference guide for secondary care. The resource acts as a guide for healthcare professionals in managing hospital stays for patients suffering from severe-very severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and long COVID (lC). It aims to improve patient care by addressing the unique needs and symptoms of patients with severe ME/CFS and lC during their hospital admissions. https://lnkd.in/gWyid72d #MyalgicEncephalomyelitis #MyalgicE #chronicfatiguesyndrome #SevereMEDay #SevereMEDay2024 #SevereME #longcovid #DisabilityDenial

Did you know that the CCS library has moved to Dunedin. CCS Disability Action is committed to creating more accessible and inclusive communities, and offer a free library for disabled people in New Zealand to ensure everyone has access to good information and resources. They have a nationwide Information Service that provides a wide range of resources on disability and the wider disability sector. Anyone can use the Information Service free of charge, no matter where they are in New Zealand. This includes people they support, parents, families and whānau, health professionals, service providers, researchers, and students. I met with Librarian Krissy last week and she is doing such a good job. Ka pai Krissy! Check them out.... they are a awesome resource for the community. https://lnkd.in/gFGHRFaH

https://lnkd.in/gQET88vf? #MyalgicE #MyalgicEncephalomyelitis #chronicfatiguesyndrome ##longcovid #DisabilityDenial

PRESS RELEASE – Critical Reforms Needed for ME/CFS Patients in Aotearoa: Coalition Calls on HDC for Action. The Health and Disability Commissioner (HDC) is currently reviewing the Health and Disability Commissioner Act 1994 (the Act) and the Code of Health and Disability Services Consumers’ Rights (the Code). These pieces of legislation aim to promote and protect the rights of health consumers and disability services consumers, ensuring the fair, simple, speedy, and efficient resolution of complaints relating to the infringement of these rights. Read more below 👇👇 https://lnkd.in/g8fDsKDZ

To create safer environment for people with #SevereME, 🗣️ always allow ADVOCATES 🗣️. Speaking takes immense energy for people with Severe ME and some are unable to speak. Obtain consent from the outset to have a family member or advocacy worker to speak on their behalf. https://buff.ly/3ysAOfO #MECFS #SevereMEDay #MyalgicEncephalomyelitis

👂LISTEN to people with #MyalgicE and their carers👂 It is crucial to have personalised care plans incorporating their needs, coming from lived experiences of symptom management. Do not ignore requests to protect patients from #PEM. https://buff.ly/3A9fEUC #SevereMEDay #MECFS

The inquest into the death of Maeve Boothby O'Neill, who had Severe ME and tragically passed away in the UK, aged just 27, continued this week. @actionforme continue to collate news coverage and share a statement from their CEO, who also serves as co-chair of the World ME Alliance. The outcomes of this inquest will have implications globally, and member organisations of the World ME Alliance everywhere are following the events. We all share our huge sadness and dismay in the treatment people with Severe ME are receiving around the world, and will be working to highlight this further in the run up to #SevereMEDay on August 8th. #MaeveInquest #SevereME #pwME https://buff.ly/4fw4Fow