Hello to all our supporters and readers of the Emerge Australia newsletter!
Hello everyone and thank you for your patience as we prepared this edition of the Newsletter. We do apologise for missing the July edition however we do hope this one makes up for it.
So, I want to start with a HUGE thank you to our ME/CFS and long COVID community for making our end-of-financial year appeal so successful! With your support, and that of a generous donor who matched donations, we exceeded our target!
To everyone who donated, shared a post, encouraged others to donate and supported the campaign, we can’t thank you enough. Your contributions are directly helping to transform ME/CFS and long COVID clinical care in Australia.
We also express our deep gratitude to Shiloh who agreed to be the face and story of our campaign. Her very personal story of living with ME/CFS since childhood and the pain, suffering and gaslighting she has experienced while connecting with Australia’s medical system highlighted why Emerge Australia is working to deliver much needed clinical education.
On 12 July thanks to Ass. Prof. Bernard Shiu and funds raised from our EOFY appeal we held our first GP education session for the new financial year at the General Practice Conference and Exhibition (GPCE) where 300 GPs and Allied Health Professionals participated in an interactive, CPD accredited education session on the diagnosis, treatment and management of ME/CFS, long COVID and other energy limiting conditions. The presentation was very well received with exceptional satisfaction ratings by those who participated. Emerge Australia has now trained more than 2000 healthcare professionals over the past three years, and we could not have done so without your ongoing support.
Since the Federal Election and following the opening and first sitting of Australia’s 48th Parliament we have been working tirelessly with our newly formed ME/CFS Alliance Australia to contact MPs to join our Parliamentary Friends Group (PFG). As a result of a change of practice for these groups, we have had to identify 20 MPs to become members of our group before it can be re-constituted. I am delighted to let you all know that Dr. Mike Freelander MP and Senator Jordan Steele-John MP have agreed to be co-chairs and we are waiting on another 8 MPs to sign up before our PFG can be authorised. We are well on our way, and we thank members of the community for reaching out to your MPs on our behalf and assisting with this task.
Below you will see information about what we did for Severe World ME DAY so I won’t mention it here however it would be remiss of me not to mention the release of the DecodeME Study findings that were released by Edinburgh University. The largest study of its kind, DecodeME analysed DNA of 15,500 people who have ME/CFS and approximately 250,000 without. The initial findings of this critical study identified 8 regions of the human genome in those with ME/CFS that differed from other subjects.
One person emotionally announced: it’s in our DNA – it’s real!!!! Pure relief and joy that now we have proof of an organic cause of this dreadful disease that affects some 67 million people world-wide of which 250,000+ are from Australia. What we now need to fight for is research funding for Australia to replicate the study so that we can obtain Australian data to spearhead drug development and creation of a biomarker to determine who is likely to develop ME/CFS among other critical research outcomes to emerge. Now that is worth fighting for.
Enjoy the rest of this newsletter and as always email me anytime with your thoughts, I always love hearing from you. Enjoy the rest of this edition and stay tuned for some major announcements in our September issue!
