Senate issues urgent call for research into Lyme-like illness

After reviewing nearly 1,300 submissions, the Senate inquiry into Lyme-like illness has issued its recommendations including increased funding for research “as a matter of urgency”

Based on its findings and submissions, the Senate committee is calling for greater acknowledgement of the existence tick-borne illness in Australia, and the need for effective treatment for patients who present with complex symptoms.

Analyses of Lyme disease in Australia have not found evidence of the causative agent in Australian animals or ticks, although some researchers have said it is possible there are illnesses caused by tick-borne bacteria or viruses that are yet to be identified but which may be widely distributed in Australia.

Many who wrote submissions into the inquiry shared their stories of being turned away for treatment from doctors’ surgeries and hospitals, with healthcare practitioners arguing that Lyme disease does not exist in Australia.

To address this, the committee has emphasised the importance of not turning patients away and the need to find appropriate treatment.

“Given that the committee accepts that the human toll is real, it is clearly necessary to go back to first principles—people are unwell, and they must be helped. It is therefore the committee’s primary objective, in this, its final report on this inquiry, to put the patients first,” it writes.

The report also cites Dr Richard Horowitz, one of the founding members and a past president of the International Lyme and Associated Diseases Society (ILADS), who advocates a move away from the term “Lyme disease”, submitting that a Lyme diagnosis fails to capture the chronic symptoms and multiple infections exhibited by many patients.

The committee therefore recommends that “Australian medical authorities and practitioners addressing suspected tick-borne illness: consistently adopt a patient-centric approach that focuses on individual patient symptoms rather than a disease label; and remove ‘chronic Lyme disease’, ‘Lyme-like illness’ and similar ‘Lyme’ phrases from diagnostic discussions”.

It also recommends:

  • Government medical authorities, in consultation with stakeholders, establish a clinical trial of treatment guidelines;
  • The Australian government allocate funding for research into tick-borne pathogens and medically appropriate treatment of tick-borne disease;
  • Development of a national approach to address tick-borne illness;
  • The Department of Health undertake an epidemiological assessment into the prevalence of suspected tick-borne illness in Australia;
  • Optimisation of diagnostic testing for each patient, with cooperation between medical practitioners and pathologists;
  • The Australian government to work with the AMA and RACGP to ensure that GPs have a better understanding of how to treat to treat patients who present with complex symptoms; and
  • The development of guidelines that emphasise the importance of a multidisciplinary approach to patient care, involving consultation between GPs and specialists in neurology, psychiatry, rheumatology, immunology, infectious diseases and microbiology.

Meanwhile, experts are warning Australians to be vigilant about tick-borne illnesses in summer, as people head outdoors to enjoy the warmer months.

“There is ongoing debate and research among scientists, policy makers and healthcare professionals to determine exactly what tick-borne pathogens we have here in Australia,” says director of the Karl McManus Foundation and infectious disease researcher Dr Mualla McManus.

“We are urging people to put that to the side. The best thing you can do is stay watchful and take some simple precautions to avoid being bitten. If you are bitten, stay alert to any indications of illness.

See the full Senate report here.

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1 Comment

  1. Janice

    Thank you for continuing to follow this story, Sheshtyn! The patient community are very excited by the inquiry’s recommendations, and look forward to some positive changes soon.

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