Chapter 1 - Patients first

[1]        Ms Fiona Caskie, Committee Hansard, Sydney, 2 November 2016, p. 32.

[2]        Journals of the Senate, No. 126–12 November 2015, p. 3380.

[3]        Journals of the Senate, No. 126–12 November 2015, p. 3380.

[4]        Senate Community Affairs References Committee, Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients, Interim report, May 2016.

[5]        Senate Community Affairs References Committee, Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients, Interim report, May 2016, p. 19.

[6]        Senate Community Affairs References Committee, Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients, Interim report, May 2016, p. 31.

[7]        Senate Community Affairs References Committee, Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients, Interim report, May 2016, p. 58.

[8]        Senate Community Affairs References Committee, Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients, Interim report, May 2016, p. ix.

[9]        See inquiry homepage, available at: https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Lymelikeillness45 (accessed 14 November 2016).

Chapter 2 - Testing for infection

[1]        Ms Elaine Kelly, Secretary, Sarcoidosis Lyme Australia, Committee Hansard, 14 April 2016, p. 9.

[2]        Senate Community Affairs References Committee, Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients, Interim report, May 2016, p. 3.

[3]        Senate Community Affairs References Committee, Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients, Interim report, May 2016, p. 3. Department of Health, Submission 495, p. 2.

[4]        See Senate Community Affairs References Committee, Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients, Interim report, May 2016, p. 3. The committee notes that there are other, known Borrelia species which cause different illnesses in humans and animals, but not Lyme disease.

[5]        Department of Health, Submission 495, p. 3.

[6]        Department of Health, Submission 495, p. 2.

[7]        Department of Health, Submission 495, p. 2.

[8]        Dr Gary Lum, Principal Medical Adviser, Office of Health Protection, Department of Health, Committee Hansard, Canberra, 20 April 2016, p. 10.

[9]        Dr Mualla McManus, Director, Karl McManus Foundation, University of Sydney, Committee Hansard, 15 April 2016, p. 28.

[10]      Professor David Forbes, Office of the Chief Medical Officer, Department of Health Western Australia, Committee Hansard, Perth, 14 April 2016, p. 1.

[11]      Lyme Disease Association of Australia, Submission 528, p. 5.

[12]      Professor David Forbes, Office of the Chief Medical Officer, Department of Health Western Australia, Committee Hansard, Perth, 14 April 2016, p. 1.

[13]      Dr Mualla McManus, Committee Hansard, 15 April 2016, p. 29.

[14]      Dr Richard Horowitz, Committee Hansard, 2 November 2016, p. 1.

[15]      Dr Richard Horowitz, Submission 936, pp. 25–33.

[16]      Dr Richard Horowitz, Submission 936, p. 2.

[17]      Dr Mualla McManus, Committee Hansard, 15 April 2016, p. 29.

[18]      Department of Health, Submission 495, p. 2.

[19]      Department of Health, Submission 495, pp. 1–2.

[20]      For details, see Chapter 3 of Senate Community Affairs References Committee, Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients, Interim report, May 2016.

[21]      NATA Australia provides assessment, accreditation and training services to laboratories. Accreditation with NATA provides assurance of laboratory competence. See www.nata.com.au (accessed 16 November 2016).

[22]      Senate Community Affairs References Committee, Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients, Interim report, May 2016, pp. 47–49.

[23]      Professor Stephen Graves, Spokesman on Lyme Disease, Royal College of Pathologists of Australasia, answer to question on notice, received 15 November 2016.

[24]      Dr Peter Dobie, Secretary, Australian Chronic Infectious and Inflammatory Disease Society (ACIIDS, formerly the Australian Chronic Infectious Disease Society, ACIDS), Committee Hansard, 15 April 2016, p. 19.

[25]      Mr Christopher Walker, Acting Chief Executive Officer, Karl McManus Foundation, Committee Hansard, 2 November 2016, p. 45.

          The Karl McManus Foundation is a charity funding research into tick-borne diseases.

[26]      Dr Richard Horowitz, Submission 936, p. 10.

[27]      Dr Richard Horowitz, Committee Hansard, 2 November 2016, p. 4.

[28]      Dr Mualla McManus, Committee Hansard, 15 April 2016, p. 28.

[29]      Professor Stephen Graves, answer to question on notice, received 15 November 2016.

[30]      Dr Richard Schloeffel, Chairperson, ACIIDS, Committee Hansard, 2 November 2016, p. 55.

[31]      Ms Jennie Burke, Director, Australian Biologics, Committee Hansard, 2 November 2016, p. 12.

[32]      The term 'Lyme-literate' is used by some clinicians, patients and advocacy groups to denote doctors who have expertise in Lyme disease and Lyme-like illness beyond that of the mainstream medical establishment. For more see Chapter 2 of the committee's interim report.

[33]      It is important to note that discussion of laboratory competence should not be linked to discussion of NATA accreditation. NATA has stated that it makes no judgement about the competence of non-accredited laboratories. The committee understands that Australian Biologics is aiming to secure NATA accreditation in the near future. See Mrs Nicole Bailey, Assistant Stakeholder Relations Manager, NATA, Committee Hansard, 2 November 2016,
p. 10; Dr Hugh Derham, Submission 453, p. 2; Dr Adam Nuttall, Submission 601, p. 2.

[34]      http://www.arminlabs.com/en. See Dr Hugh Derham, Submission 453, p. 2; Dr Adam Nuttall, Submission 601, p. 2.

[35]      See Dr Hugh Derham, Submission 453, Attachment 1, p. 11; Dr Adam Nuttall, Submission 601, p. 2.

[36]      www.igenex.com. See Dr Richard Schloeffel, Submission 2, Attachment 1, p. 7.

[37]      Australian Biologics Testing Services, Submission 545, p. 1.

[38]      Australian Biologics, Submission 545, p. 2.

[39]      A detailed discussion of alternative testing protocols, including arguments presented for and against their use, is contained in the committee's interim report and is not repeated here.

[40]      A 'false positive' is a test result that indicates that a person has an illness when they do not; a 'false negative' is a test result that indicates that a person does not have a particular disease when they in fact do.

[41]      Professor Stephen Graves, answer to question on notice, received 15 November 2016.

[42]      Professor Stephen Graves, Committee Hansard, 2 November 2016, p. 16.

[43]      Committee Hansard, 2 November 2016, pp. 16–17.

[44]      Australian Biologics, answer to question on notice, received 17 November 2016, pp. 2–3.

[45]      Professor Stephen Graves, Committee Hansard, 2 November 2016, p. 17.

[46]      Mr Christopher Walker, Committee Hansard, 2 November 2016, p. 45.

[47]      Senate Community Affairs References Committee, Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients, Interim report, May 2016, p. 57.

[48]      National Serology Reference Laboratory, answer to question on notice, received
18 November 2016, p. 1.

[49]      Department of Health, Submission 495, p. 2.

[50]      Dr Stuart King, Submission 1289, Attachment 1, p. 1.

[51]      Lyme Disease Association of Australia, Submission 528.1, pp. 7–9

[52]      Lyme Disease Association of Australia, Submission 528.1, p. 7.

[53]      Department of Health, Submission 495, Attachment D, pp. 8–14.

[54]      Dr Gary Lum, Department of Health, Committee Hansard, 2 November 2016, p. 58.

[55]      Dr Mualla McManus, Committee Hansard, 15 April 2016, p. 28.

[56]      Dr Richard Horowitz, Committee Hansard, 2 November 2016, p. 2.

[57]      A clade is a group of organisms, usually species, more closely related to one another than any group, implying a shared recent ancestor.

[58]      Dr Gary Lum, Department of Health, Committee Hansard, 2 November 2016, p. 59.

[59]      Professor Peter Irwin, Principal, College of Veterinary Medicine, Murdoch University, Committee Hansard, 2 November 2016, p. 25.

[60]      Department of Health, Submission 495, p. 4.

[61]      Professor Peter Irwin, Committee Hansard, 2 November 2016, p. 25.

[62]      Professor Peter Irwin, Committee Hansard, 2 November 2016, p. 26.

[63]      Professor Peter Irwin, Committee Hansard, 2 November 2016, p. 25.

[64]      See discussion, Committee Hansard, 2 November 2016, pp. 25–26.

[65]      Dr Ann Mitrovic is a Research Fellow with the Tick-Borne Diseases Unit, School of Medical Sciences (Pharmacology), University of Sydney.

[66]      Professor Peter Irwin, Committee Hansard, 2 November 2016, p. 27.

[67]      Dr Ann Mitrovic, Committee Hansard, 2 November 2016, p. 27.

[68]      Ms Sharon Whiteman, President, Lyme Disease Association of Australia, Committee Hansard, 2 November 2016, p. 43.

[69]      See Department of Health, Submission 495, p. 4.

Chapter 3 - Treating the illness

[1]        Ms Julianne Hansen, Committee Hansard, 15 April 2016, p. 42.

[2]        Ms Dianne Ellis, Committee Hansard, 2 November 2016, p. 34.

[3]        Chapter 2, Senate Community Affairs References Committee, Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients, Interim report, May 2016.

[4]        Chapter 2, Senate Community Affairs References Committee, Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients, Interim report, May 2016.

[5]        Australian Medical Association, Submission 456, p. 1.

[6]        Medical Council of New South Wales, Submission 935, p. 2.

[7]        Medical Board of Australia and Australian Health Practitioner Regulation Agency, Submission 533, p. 3.

[8]        Infectious Disease Department, Austin Health, Submission 820, p. 2.

[9]        Associate Professor Stephen Bradshaw, Practitioner Member, Medical Board of Australia, Committee Hansard, 2 November 2016, p. 60.

[10]      Karl McManus Foundation, answer to question on notice, received 18 November 2016, p. 4.

[11]      Karl McManus Foundation, answer to question on notice, received 18 November 2016, p. 1.

[12]      Karl McManus Foundation, answer to question on notice, received 18 November 2016, p. 1.

[13]      Dr Richard Schloeffel, Chairperson, Australian Chronic Infectious and Inflammatory Diseases Society, Committee Hansard, 2 November 2016, p. 50.

[14]      Dr Richard Schloeffel, Committee Hansard, 2 November 2016, p. 55.

[15]      Dr Richard Schloeffel, Committee Hansard, 2 November 2016, p. 48.

[16]      Dr Richard Schloeffel, Committee Hansard, 2 November 2016, p. 49.

[17]      Dr Richard Schloeffel, Committee Hansard, 2 November 2016, p. 48.

[18]      Dr Richard Horowitz, Committee Hansard, 2 November 2016, p. 1.

[19]      Dr Christopher Walker, Acting Chief Executive Officer, Karl McManus Foundation, Committee Hansard, 2 November 2016, p. 46.

[20]      Mr Mike Pym, Director, Karl McManus Foundation, Committee Hansard, 2 November 2016, p. 47.

[21]      Dr Richard Schloeffel, Committee Hansard, 15 April 2016, p. 23.

[22]      Karl McManus Foundation, answer to question on notice, received 18 November 2016, p. 4.

[23]      Dr Richard Horowitz, Committee Hansard, 2 November 2016, p. 1.

[24]      Dr Richard Schloeffel, Committee Hansard, 15 April 2016, p. 49.

[25]      Dr Richard Schloeffel, Committee Hansard, 15 April 2016, p. 49.

[26]      Postural orthostatic tachycardia syndrome (POTS) is a condition in which sufferers experience an abnormal heart rate increase when they chance from a supine to an upright position.

[27]      Dr Richard Schloeffel, Committee Hansard, 15 April 2016, p. 49.

[28]      Dr Richard Schloeffel, Committee Hansard, 15 April 2016, p. 50.

[29]      Dr Richard Horowitz, see Submission 936, p. 1.

[30]      ACIIDS, answer to question on notice, received 17 November 2016, p. 2.

[31]      Dr Gary Lum, Principal Medical Adviser, Office of Health Protection, Department of Health,  Committee Hansard, 2 November 2016, p. 59.

[32]      ACIIDS, answers to questions on notice, received 17 November 2016, p. 3.

[33]      Karl McManus Foundation, answer to question on notice, received 18 November 2016, p. 3.

[34]      ACIIDS, Submission 370, Attachment 24. ILADS treatment guidelines can be found at http://www.ilads.org/lyme/treatment-guideline.php (accessed 23 November 2016).

[35]      ACIIDS, answer to question on notice, received 17 November 2016, p. 1.

[36]      Department of Health, answer to question on notice, received 21 November 2016, p. 5.

[37]      Dr Richard Schloeffel, Committee Hansard, 2 November 2016, p. 51.