Resources and Connections for Members
1. Workplace – WellME’s Core Social Networking Tool
A way for everyone in WellME to connect, have different chat groups about different interests, and connect with others in your own community.
ANZMES - This is the national umbrella support organisation in NZ. To follow the ANZMES facebook page, go here. Go to their website for “What is ME”. They produce a quarterly magazine as well called "Meeting Place", go to their website and subscribe if interested.
Local Support in other regions - View list of other local support groups in NZ.
Rest Assured Respite Charitable Trust is working towards providing a place of respite for people with ME/CFS.
NZcare4ME is a NZ support network for carers of young people with ME/CFS and related conditions. Go here for their facebook page and join the group.
Other online support groups on Facebook
ME ADVOCACY/AWARENESS RAISING
Their website: m.e.awareness.nz
Here is a list of key resources produced by M.E. Awareness NZ:
Key Facts about ME - View their infographic here.
What You can do to help ME - View their infographic here.
What is ME? - View their single A4 page handout here.
Their Facebook page - Like their page to follow & support advocacy efforts in NZ.
List of #20000MissingNZ Posts - their social media awareness campaign held on 5th-12th May 2019, shared key information and stories from those people missing from their lives in NZ, because of ME. View list of posts /topics here.
Resource List - here is their document link.
2. #ME Action - For those of you who want to know what is happening internationally from an ME advocacy and education viewpoint – explore the ME Action website. You can sign up for their updates/emails too. ME Action also provide a range of international facebook groups for patient support, caregiver support, advocacy and social/affinity.
1. Health Rising. Cort Johnson authors the blog on the Health Rising site. He is one of the true heroes in the field, tirelessly interpreting the complex research as it appears so that it digestible for all of us. If you are interested in keeping up with the research, Cort has done all the work for you. He is thorough, informed, connected and writes brilliantly. Highly recommend a look on a weekly basis - or search a topic that is of interest. He will have covered it at some time!
2. Virology blog with David Tuller. Details David’s advocacy work for PwME, particularly around his courageous exposing of the flaws of the PACE trial.
STAY UP TO DATE
1. Science for ME - Definitely worth joining this forum where researchers, scientists and the ME/CFS community meet to discuss biomedical research and advocacy. Some great discussions happen on the NZ news thread, but also definitely worth exploring the forum in general.
2. Twitter - A great way to stay current and connected to the latest research findings. You don’t have to participate/tweet, can just follow a whole lot of interesting people and stay up to date!
Here are some organisations and people well worth following:
NZcare4ME, M.E. Awareness NZ, M.E. Australia, Emerge Australia, #MEAction Network AU, Open Medicine Foundation, Bateman Horne Centre, #MEAction Network, #MEAction Network UK, ME Association, Action for M.E, #MEAction Scotland, May 12th, Dysautonomia Intl, Microbe Discovery, Tapanui ‘Flu (‘Tui Tapanui),Carolyn Wilshire, Dr Mark Guthridge, Cort Johnson, Tom Kindlon, Michael VanElzakker, Leonard Jason, Lucinda Bateman, Valerie Eliot Smith, davidtuller, Jennifer Brea, Llewellyn King,
BATEMAN HORNE CENTRE
Lucinda Bateman, who founded the Bateman Horne Centre is an extremely generous clinician and educator. This organisation has placed itself at the centre of clinical excellence and also works as a hub of connection for major research collaborations. The Bateman Horne Centre have undertaken to ensure that people with ME have access to resources and information as it emerges. They have a range of webinars and also run regular education sessions that are streamed. Have an explore of their website.
They also have a mini educational series by Dr Bateman on ME/CFS and Fibromyalgia.