Hello to all our supporters and readers of the Emerge Australia newsletter!
As I write, Australia is gearing up for a federal election on 3 May. In our previous newsletter we outlined to you our election strategy designed in collaboration with our colleagues in Bridges & Pathways; ME/CFS Australia; MEANA and MEGA. Our four election priorities have been widely communicated, and we are grateful to everyone who has been reinforcing our messaging to MPs through your local members. Government needs to invest in ME/CFS and long COVID. See first article in this newsletter for more information.
To that end I have spent time lately in Canberra and other states meeting with MPs, Advisors and Department of Health officials, discussing our case for support on your behalf. I urge you to continue reaching out to your candidates right up to election day and beyond because your voices are being heard, and our unity of purpose is being noticed.
It was wonderful to have so many of you attend our Long COVID Awareness Week Symposium recently and we are now gearing up for World ME/CFS Awareness Day/Week in early May. See more information in this newsletter.
Some of you may have already seen the message I put out on social media last week where I briefly addressed feedback from a few regarding quotes attributed to me in a recent article published in The Age and SMH about a machine-learning tool developed by researchers at University of Melbourne that can predict ME/CFS. I was reported as commenting that people with long COVID will largely recover over a period of time, whereas people with ME/CFS rarely recover.
We know what causes long COVID, which is why this article was about a possible diagnostic tool for ME/CFS. We also know that people who have had post-infection conditions for a short time, less than a year, have a better chance of recovery than those who have been sick for longer. This is why some people who initially have lingering symptoms after COVID, and get diagnosed with long COVID, go on to recover. But, like many people with ME/CFS who have been sick for years or decades, there are many people with long COVID who have been unwell for years since their first infection and are not recovering.
For those of you living with long COVID, we see you and we are here for you. This was not clear in the published comments attributed to me. I recognise the way my comments were portrayed was blunt and lacked the context in which they were made, thereby upsetting some readers. I apologise to those who were upset by the comments that were published. Once an interview has been granted, we have no control over what will be published.
I do wish to thank the many hundreds of people who made contact following the article providing their support and agreeing that a test such as the one reported on would be a diagnostic game changer, clarifying and reducing the time to diagnosis for people with ME/CFS. The availability of a formal diagnosis makes it far more difficult for medical providers to gaslight patients.
As always – feel free reach out to us at anytime if we can assist in any way.
