Chronology

Date Event
2009 Lyme Disease Association of Australia (LDAA) formed by sick Australians
2012 LDAA Australia Patient Experience Survey and Report
2013 /01 Department of Health – Scoping Study – LDAA submission
2013 LDAA successfully requested to be patient representative on Clinical Advisory Committee into Lyme disease (CACLD) convened by then Chief Medical Officer (CMO) Prof Chris Baggoley
2013 /05 LDAA joins Worldwide Lyme Awareness protests
2013 /05 LDAA commences tracking patients and tick bites – statistical plots
2014 /04 Royal College of Pathologists Australasia issue Position Statement on Lyme disease LDAA Response
2014 /07 The CACLD met 5 times and then ceased with Prof Baggoley citing (to LDAA) lack of cooperation/discussion amongst medical members.
2015 /05 LDAA ran a successful call to action campaign with over 20,000 postcards mailed to politicians nationally during our May awareness period.
2015 /05 LDAA Response to Dept of Health Statement
2015 /09 LDAA submits to Chronic Disease Inquiry
2015 /09 Stephen Jones MP successfully lobbied for a Lyme disease roundtable meeting as part of a Chronic Disease Inquiry. The meeting occurred on Sept 18th artefacts include Hansard and Recommendations
2015 /09 Ken Wyatt MP Lyme disease roundtable Hansard:
“I want you to cast your minds back to when we had HIV-AIDS. That was known for some time, but we did not test for it until it became an epidemic in the sense of the way Australia had to react to it. Our laboratories were not ready at the time, and the policy thinkers within health jurisdictions, including the Commonwealth department of health, had not turned their minds to much more investigative work until the information was provided from a number of sources. Then we went into a strong overdrive in treating people with HIV-AIDS, and we looked for cures. Barry Marshall, with ulcers, had a theory that he put forward and was, in a sense, howled down by colleagues in his profession. He went on to become a Nobel prize winner for the work that he did.
I just find it negligent—extremely negligent—that we have so many Australians suffering from what appears to be either Lyme or some form of Lyme disease, and yet we are having debates around who is right and who is wrong and whether the testing is right or wrong. Why aren’t we being proactive? I am going to ask the Department of Health. What is your role and objective in the management of the health of Australians, Dr Lum?”
2015 /11 Senator Madigan travelled Australia to hear from patients, doctors and pathologists (Melbourne, Ballarat, Sydney and Sunshine Coast)
2015 /11 Senator Madigan received full cross-bench support for a Senate Inquiry into Lyme-like Illness
2016 /03 Senator John Madigan addresses parliament
2016 /03 Friends of Lyme meeting at Parliament House, Canberra – hosted by Senator Madigan Dr Schloeffel of ACIIDS speaks
2016 /04 LDAA Submission to the Senate Inquiry (confidential – non-redacted version)
2016 /05 Senate Inquiry lapsed with dissolution of 44th Parliament
2016 /05 CWA of NSW commits 3 years of medical research funding to the LDAA to advance Lyme disease research
2016 /09 LDAA Submission to the National Health and Medical Research Council seeking a Targeted Call for Research into Lyme disease
2016 /09 Senate Inquiry re-adopted in 45th Parliament
2016 /10 SBS Insight airs Tick Sick segment on Lyme disease
2016 /11 LDAA Supplementary submission (confidential – non-redacted version)
2016 /11 Senators Siewert, Moore and Lambie address parliament on Senate Inquiry Final Report recommendations, supporting a Patients First approach
2017 /04 Department of Health announces funding of $3 million for a Targeted Call for research on Lyme disease
2017 /09 LDAA provides funding to Murdoch University to commence pilot study of patients
2017 /11 Senators Siewert and Reynolds speak on government response to Senate Inquiry Final Report – Patients First.
2017 /11 Department of Health publishes National Serology reference Laboratory’s report on Performance of Testing assays for Lyme disease in Australia
2017 /11 LDAA Response to Government Response
2017 /12 LDAA Submitted Questions to Department of Health on National Serology Refence Laboratory reporting in Testing assays
2018 /04 LDAA announces Scientific Advisory Committee – International biomedical science and clinical medicine experts have joined local experts
2018 /04 Department of Health announces name change from Lyme-like illness to Debilitating Symptom Complexes Attributed to Ticks (DSCATT)
2018 /04 Prof Murphy, CMO convenes DSCATT Forum with state and territory Health Officials, Heads of Medical Colleges, two patient groups and Lyme treating doctor, Dr Richard Schloeffel; outcomes were formally reported
2018 /07 Prof B Murphy, CMO convenes DSCATT Forum with patient groups in Sydney and promised second more in depth and facilitated forum
2018 /08 LDAA presents at national Country Women of Australia (CWAoA) conference in Canberra
2018 /08 National Party lobbied for action for Australian Lyme-like disease by Motioning:
That this Nationals Federal Council request the Australian Government to: 

  1. Recognise that a Lyme-like disease exists in Australia and is placed on the ‘notifiable disease’ register.
  2. Insist that doctors who are treating Lyme-like disease in Australia are protected from investigation and reprisals, in particular but not limited to, Medical Boards in Australia.
  3. Insist that general practice and infectious disease specialist doctors are provided best practice education on Lyme-like diagnosis and treatment.
  4. Ensure patients are offered affordable testing, treatment, and full access to acute and chronic disease support.
  5. Commit to research, on par with other infectious diseases, such as Zika, SARS, Ebola etc.
  6. That this matter be treated with urgency and is initiated prior to the upcoming Federal Election.
2018 /11 In partnership with Spectrumceuticals, Dr Schloeffel, Dr Gupta and Dr Read of ACIIDS delivered tick-borne diseases training to 50 medical doctors (RACGP credits approved)
2018 /11 DSCATT teleconference with Dept of Health (OHP), Dr Horowitz and Dr Schwarzbach (international advisors) and LDAA
2018 /11 Medically Abandoned Abstract accepted by National Rural Health Alliance
2018 /11 Department of Health Approached the Market (ATM ID: Health/18-19/04745 seeking a suitable supplier to develop an evidence-based clinical pathway, including a multidisciplinary care approach that can be flexibly applied in both private and public healthcare settings.
2019 /01 National Health and Medical Research Council Targeted Research Call announces they’ve allocated $3m DSCATT funding to 2 projects expected to report in 2023
2019 /01 LDAA responds to NHMRC funding allocation
2019 /01 Human Tick-Borne Diseases in Australia report published
2019 /02 LDAA blogpost by Dr Shah of IGeneX lab (US) quotes 46% of 100 Australian samples test positive for Borrelia burgdoferi or Relapsing Fever Borrelia. Republished by lymedisease.org (premier US Lyme charity)
2019 /02 LDAA submits Pre-Budget Submission for 2019-20 budget consideration
2019 /02 Department of Health Approached the Market seeking a suitable supplier to “increase the knowledge of medical professionals and the public on tick-borne illnesses that are acquired in Australia and overseas, as well provide information on tick bite prevention and safe tick removal methods.”
2019 /03 LDAA blogpost, ‘Death by Psychiatry’ outlining the tragic death of retired CSIRO scientist, Dr John Curnow’s wife Barbara
2019 /03 Unnecessary death of Lyme patient, Réne Michaelis, their story ‘When ALS is actually Lyme’
2019 /03 National Rural Health Alliance publish ‘Medically Abandoned’ on Partyline
2019 /03 LDAA representatives to present ‘Medically Abandoned’ at NRHA conference
2019 /06 LDAA submission to Medical Board of Australia’s public consultation into ‘clearer regulation of medical practitioners who provide complementary and unconventional medicine and emerging treatments’