💚 Essential news and updates from the LDAA
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New Year, New Hope?
If you watched the Senate Inquiry Public Hearing, you may share our feelings of cautious hope. Can we dare to trust our elected officials again after the soul-crushing lack of outcomes from the last Senate Inquiry?
Understandably, it was an emotional day for us all.
One of the biggest barriers to progress—gaslighting, 'cult-like' and 'willfully obstructive' behaviour by practitioners and those in influential decision-making roles—was openly acknowledged and discussed. Key figures were questioned on why we have not moved beyond recognising that "pathogens in ticks can make humans sick," why the only treatment trial to date is psychology-based, and why those responsible for implementing the last Inquiry Report’s recommendations have failed to act.
The issues surrounding the DSCATT Clinical Pathway, pathogen types, and testing complexities were also scrutinised. Some witnesses took Committee questions 'on notice' and will provide further evidence in writing. Representatives from the Lyme advocacy community across Australia did an outstanding job of pushing our most critical issues forward.
In addition to watching the Public Hearing, you may find Mariella Attard’s article Gaslighting and cults: our baffling relationship with tick-borne diseases insightful.
We will keep you posted.
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Image above: Elaine Kelly (Sarcoidosis Lyme Australia), Jacqui van Teulingen (LDAA) and Sharon Whiteman (LDAA)
Senate Inquiry 2024 - 25
Access to diagnosis and treatment for people in Australia with tick-borne diseases.
On 20 November 2024, the Senate referred an inquiry to the Community Affairs References Committee for report by 26 March 2025. (Submissions were due on 17 January 2025).
Submissions are now available for viewing/download online on the Australian Government Senate Inquiry web page.
Public Hearing
"... Senator Reynolds mentioned a cult, and absolutely there is a cult of negative, righteous-belief, non-evidenced-base zealots who somehow block this process of proper diagnosis, proper treatment of patients by good doctors with deep understanding of complex illness..."
“The second thing to do is let it be known that doctors can test and treat simple infections, so you don’t get sent to an infectious disease specialist unless you have a complex infection, and a lot of this isn’t complex at the beginning. It’s only complex when it’s allowed to get complex.”
Dr Richard Schloeffel, OAM, retired Australian GP (has treated over 1200 patients with tick-borne disease).
We highly recommend putting some time aside to watch the recording of the the Senate Inquiry Public Hearing (Canberra) from Wednesday 29 January.
Thank you
We'd like to thank everyone who took the time to submit (we know how big an effort that is) and those who appeared as witnesses in support of Lyme and other tick-borne diseases:
- Our team: Sharon Whiteman, Jacqui Van Teulingen and Elaine Kelly from the LDAA and Sarcoidosis Lyme Australia
- Peter Owen of Tick-borne Illness Community Network Australia (TICNA) and Conquering Chronic Illness
- Christopher Cole, Lyme patient parent
- Dr Leona Gilbert, LDAA Scientific Advisory Panel Chair, CEO Tezted and global Lyme advocate
- Dr Hugh Derham, Australian doctor
- Dr Richard Schloeffel, retired Australian doctor
- Dr Bernie Hudson, Australian doctor
- Professor Holly Ahern, Project Lyme (US), Mothers Against Lyme (US) and Lyme patient parent
- Karen Smith and Opeia Stefanovic of Lyme Awareness and Research Australia
- Rick Barnes of The Black Dot Project (TBD legal project)
- Alistair Mills, Lyme patient
We should also acknowledge others who took time out to appear on the day: Professor Richard Kanaan, Dr Nicolas Johnson, Dr Gary Deed, Professor Gary Lum and Matthew Hardy.
Special shoutout to Committee members Senator Penny Allman-Payne (Chair), Senator Louise Pratt, Senator Linda Reynolds, Senator Maria Kovacic, and Senator Wendy Askew for their empathy, insightful and intelligent questions and overall support.
Disappointingly, representatives from Murdoch University's Troublesome Ticks study and the Department of Health and Aged Care did not appear. At the Hearing, Committee members indicated that they would follow up with those parties prior to reporting.
What happens next?
Some witnesses were asked to provide additional material in response to a question (from the Committee) taken ‘on notice’. The Community Affairs References Committee are required to report by 26 March 2025.
Stay up to date on our Senate Inquiry web page and Facebook page.
Saving My Son from Lyme Disease
By Jade Morgan
In 2012 my life changed, I was unknowingly bitten by a tick. I quickly became unwell, and within a few short months I was unable to walk. Fast forward through countless specialists, rehabilitation appointments and a year of questions, I was diagnosed with tick-borne illness. To get this diagnosis, I had to move states and spend hours and hours researching my symptoms, until one day ‘Lyme Disease’ appeared in my search.
After scrolling through information for days I found that many of my symptoms matched this diagnosis. Back then, you could actually search for those words along with “doctor” and find someone willing to help – although the options were limited, it was far better than what is available today. I will be brief about the next few years as this story is really about my son, but without my experience, his could have been very different.
In 2015, I had my initial appointment with a doctor who understood tick-borne illness. He did a thorough assessment and went over my years of ‘mysterious’ symptoms. By the end of that appointment he said, “I am sending you for blood tests for tick-borne illness, but I am confident that, even without those bloods and based on your symptoms, this is what you have.”
I should have followed up straight away, but I had a period of better health and, after researching more about the illness, I really scared myself. So, I didn’t follow up until 2016, when I started a combination of antibiotics. >> Continue reading...
Free Therapeutic Classes are Back in 2025
These classes are gentle, effective and tailored to those living with chronic health conditions. Highly recommended by the LDAA. See you there!
You're Invited:
Lymie Lunches
Tuesday Lymie Lunch is on again in 2025.
It's a casual, friendly and safe Zoom group where we laugh, cry, and share what works. Where no one will ever say "you don't look sick."
It's the perfect antidote to feeling stuck at home and alone. No RSVP required, just come along. We'd love to meet you!
You're Invited:
Gentle Healing Classes
Current classes - Fascia release, breathwork, mindfulness and nervous system healing.
These FREE classes are tailored to the needs of chronic illness sufferers. (If you're unsure, you can try a recorded class on the Sanctuary Youtube channel).
View the class calendar on the Sanctuary website.
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LDAA Newsletter Back Issues
We make past newsletters available so you never miss essential news and updates! Make yourself a cuppa and catch up in your own time.
Yours in green
Sharon Whiteman
President and CEO
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