Welcome everyone to the July edition of the Emerge Australia newsletter.
A huge thank you from Emerge Australia
We would like to say a HUGE thank you to our ME/CFS and long COVID community for making our end of financial year appeal successful.
A massive effort from our community and $20k worth of matched donations from a generous anonymous donor and some new philanthropic donors, helped us achieve our target and raise a little over $100k.
To everyone who donated, shared a post, encouraged others to donate and supported the campaign, we can’t thank you enough.
Finally, we thank Henry and his family who have been brave enough to share their very personal story of living with ME/CFS and long COVID, and for Henry’s ongoing advocacy in raising awareness about the systemic issues which many living with these conditions face.
In this issue you will read about our Count ME campaign and news of the AIHW including ME/CFS in their Australian Burden of Disease Study.
Importantly and additionally we urge you to be counted by participating in the Living with ME/CFS and long COVID – a national burden of disease study. We are collaborating with Edith Cowan University and the survey is now live. We urge everyone to take this survey which will deliver vital Australian data to underpin programs and health policy. More in the full newsletter.
As you will see from the contents of this edition, our small mighty team is working across key areas of clinical education, advocacy, patient services and of course bio-medical research which of course includes our AusME Biobank and Registry. We are also responding to policy briefs from the Department of Health and the NDIS.
Finally we are excited to launch our first Patient Decision Aid on Exercise – how much if any is right for you? We will be publishing a further two Decision Aids – one on Orthostatic Intolerance and another on COVID Vaccination – Is it right for you? Our patient decision aids are designed for you to use when engaging with your GP and be a guide to improved management – very exciting new resources!
Thanks again to everyone who writes in to us with your feedback– we really appreciate it and do our best to address any issues that you raise.
Enjoy reading this July edition!
