Hello to all our supporters and readers of the Emerge Australia newsletter!
At the time of writing this introduction to our newsletter I am dumbfounded as to how quickly the end of the year has come around. Do you know it is only 83 days to Christmas? That is so scary given the work to be completed to year end and the funds Emerge Australia still needs to raise, let alone the meetings we need to hold with Government regarding health policy change and funding of essential services for people with ME/CFS and Long COVID.
Apart from the above, this is an incredibly busy period for anyone involved in research and submitting for MRFF funding that has been made available by the Federal Government.
We receive many comments from you regarding Clinical Guidelines and of course hear and share your frustration regarding announcements for updating of these. Please be assured we work tirelessly towards this aim in the background and will continue to do so until we have confirmation that funding for this critical work has been confirmed. New evidence is coming to light almost weekly at present which significantly helps our case.
On 1 September the Emerge Australia Medical Officer Dr. Richard Schloeffel, our Research Manager Dr. Michelle Tavoletti and I attended Australia’s first Long COVID conference in Melbourne. Many valuable contacts and opportunities for further engagement from the ME/CFS perspective were established. We are constantly fighting the resistance by State and Federal Governments to inclusion of ME/CFS in discussions about Long COVID, it’s treatment and management. We have ongoing dialogue with all levels of Government and continue to do so on your behalf. To that end we are developing plans for 2024 that will open up more opportunities for critical interaction with key stakeholders that we hope will lead to changes in health policy and practice. We would all like it to come quickly but this form of advocacy and representation continues to be a major work in progress.
The Medicines Australia PharmAus conference was held in Canberra on 6 September. Attended by many MPs and a large cross section of the pharmaceutical industry, we were able to connect and reconnect with pharma colleagues and outline some of the challenges faced by a disease for which there are few pharmacological treatments. This was an important event for Emerge Australia to attend to foster new connections and speak with MPs. We connected with the Health Minister, Shadow Minister, advisors and other MPs in attendance. More to come on the longer-term outcomes of this event.
That’s about enough from me. Further in the newsletter you will read about the launch of our new registry – AusME which is an exciting development on which the Emerge Australia team has been working most of this year.
Read more about how you can help us by telling encouraging your friends to put a fundraising team together for our Melbourne Marathon. It’s not too late to donate to this event – you don’t have to leave the comfort of your home to do so and have your friends support Emerge Australia.
We hope you enjoy reading the rest of this newsletter that has been put together by our wonderful Emerge Australia team who are always there to respond to your calls and emails. As always I invite you to write to me at: [email protected] with any ideas, thoughts or questions. Enjoy!