The Clinical Advisory Committee on Lyme Disease Scoping Study Submission
Scoping Study: (http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm).
The Lyme Disease Association of Australia (LDAA) would like to publicly thank the lead authors (who wish to remain anonymous) and their team who worked day and night, tirelessly for the past 6 weeks to give comment to the Scoping Study. They are all patients or carers and family of Lyme patients, some of them working amid their own Lyme disease crisis to ‘get the job done’. There were two reports of patients with only vision in one eye pushing through at their computers to get our say submitted in a comprehensive and professional way.
The LDAA highly respects the fact that there are many stakeholders in the current evaluation of Lyme disease or Lyme-like illness in Australia – pathologists, Infectious Disease Specialists, specialist GP’s and more. The patient perspective however is quite different. To quote our lead author “We live Lyme disease every single day and while anyone else could walk away tomorrow, we can’t”. Whilst we value and desire scientific rigour, as patients, we already know Lyme disease is here and we want effective and affordable diagnosis and treatment.
Read our full submission here:
WALA (Western Australia Lyme Association) Scoping Study Submission: WALAScopingStudySubmission
LymeLinks Scoping Study Submission: LymeLinksScopingStudySubmission
SLA (Sarcoidosis Lyme Association) Scoping Study Submission: SLAScopingStudySubmission
Lyme patient’s voices heard at highest level.
The Lyme Disease Association of Australia held its inaugural meeting for the peak national body’s newly established ‘Lyme Patient Consultative Group’ (LPCG) on January 23rd.
The purpose of the group is to act as a formal mechanism to acquire and compile evidence, opinions and comments from patients in a collaborative and inclusive way. The group have agreed to meet regularly with the intention of improving conditions on all levels for Lyme patients, their carers and families throughout Australia.
The first meeting was a great success and included representatives from 10 national patient groups; and included a briefing and Q&A with Dr Gary Lum from the Department of Health regarding the processes of the Clinical Advisory Committee on Lyme Disease.
“Dr Lum’s attendance was a welcomed part of the first meeting as it gave him an opportunity to hear patient concerns directly, and for many representatives to hear directly from a senior government official.” CACLD patient rep, Nikki Coleman said.
Following the briefing from Dr Lum, the next priority was to ensure that the wider patient communities knew of and were connected to the various initiatives available to them to give feedback and submissions to the Clinical Advisory Committee on Lyme Disease Scoping Study currently available for comment (http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm).
“Our intention is for the group to act as a united voice for all Lyme disease patients, their carers and families in Australia going forward.” says President, Sharon Whiteman. “We’re extremely grateful for all the LPCG representatives who are volunteering their time to support this ‘history in the making’ group.”
A full media kit is available, and a copy of the inaugural meeting minutes will be available soon from the Lyme Disease Association of Australia’s website www.lymedisease.org.au.
Meeting Minutes: 20140123LPCGMeetingMinutesFinal
Update on Community Impact as Result of AHPRA Ruling for Dr Ladhams
We have spoken to the CMO’s office this morning and they are fully aware of Dr Ladhams AHPRA ruling this past Friday. As background, please be aware that the CMO has no direct delegated jurisdiction in regards to APRHA rulings – and this is so for obvious important reasons. Medical registering bodies have completely separate mandates and responsibilities.
They would however like to reassure the broad Lyme community that the commitment of the CMO to the CACLD process is unchanged. It was highlighted to me that the federal commitment to the CACLD, scoping study and investment into research is in itself a significant recognition of their being a legitimate problem in Australia that needs to be fully understood. It’s also very important to understand government process – change does not and unfortunately can not happen overnight.
Please find attached our communication to the CMO today.
Invitation to Lyme Patient Consultative Group
We have received feedback from our community that some are not feeling heard and not really being aware what the LDAA was doing at the CACLD level and there’s uncertainty about whether the community has been fully represented etc… We had a GREAT suggestion from the community that have a reference group for patients to have a more direct voice to the CMO and CACLD.
Nikki Coleman, LDAA patient rep to the CACLD, presented it to CMO and they are supportive. This group is intended to not only give the wider Lyme community a voice and more formalised mechanism of inclusion but also to draw out the best minds, inspiration and highest outcomes for all.
It will also serve as a community communication/collaboration pathway into the future. Our best outcomes for Lyme awareness, diagnosis and treatment advances will come from an aligned and cohesive community voice.
Whilst we would love for individuals to be able to join the LPCG, because there are over 10,000+ people with Lyme disease in Australia, this just isn’t possible. For this reason we are asking patient support groups (such as online groups and regional groups) to nominate someone to the LPCG. If you are interested in joining that is fantastic! Can we ask that you talk to the groups you are involved with & decide together who you want to nominate. If you are not currently a part of a group with which to express your wants and needs, there are many around the country – let us know and we can point you to one. Thanks!
We would love a representative from each regional and/or support group – please read the attached letter for details:http://www.lymedisease.org.au/
Dr Peter Irwin Needs Our TICKS!
Murdoch University in Western Australia were recently awarded an Australian Research Council (ARC) Linkage Grant to further their tick research program under the leadership of Associate Professor Peter Irwin (Veterinary). The grant will enable the development of ‘a new molecular toolkit to investigate zoonotic tick-borne pathogens in Australia’.
Lyme Research ~ Would you like to help prove existence of Lyme in Australia?
There is an opportunity for all those interested in proving that Lyme disease exists in Australia to be part of this research.
Clinical Advisory Committee on Lyme Disease (CACLD) Meeting Notes
Nikki Coleman, LDAA Patient Representative – 27 November 2013
The Chief Medical Officer of Australia, Professor Chris Baggoley stressed that there are a large number of people in Australia who’s lives are miserable because of the Lyme disease or Lyme-like illness that they suffer. For some it has completely altered their lives and that of their family, impacting on their health, their work, their social lives and the finances. It is these people who are the focus of our work and inspires the CMO to keep working on this problem, and we need to honour the experience of Lyme patients around Australia as we do this important work.
The CACLD was set up as a time limited committee to finish at the end of 2013, however, clearly the work will not be finished this year and as it is very important will continue into 2014.
The CACLD received the report of the scoping study by Professor John Mackenzie. This report will be uploaded to the CMO’s webpage in the next few days, and the CMO invites people to respond to the report. It will also be sent to all the Chief Health Officers of each state and territory around Australia to comment on. The CACLD discussed their views on the report (Nikki highlighting the factual error in the introduction, about how many people the US CDC believes are diagnosed with Lyme disease in each year in the US & other members pointing out some other concerns). The CACLD gave the CMO feedback on which of the 5 recommendations are the most important – so that if funding is limited, then the most important research can be done first.
The CMO noted that for those people who believe that Lyme is in Australia the research proposed seems unnecessary. But for those who are not yet convinced that Lyme is in Australia, the research is vital to helping them come to a new understanding of Lyme disease. The research is also vital in being able to lobby government departments such as the Pharmaceutical Benefits Scheme to cover medications for Lyme disease patients in Australia.
The CMO is inviting people to provide him with feedback about the Scoping Study, particularly in relation to the 5 recommendations. Details on how to do this will be on the DOHA website – after the scoping study is uploaded in the next few dayshttp://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm
The Diagnostic Working Group of the CACLD is continuing to work on a diagnostic pathway that can be used by medical practitioners in Australia to diagnose Lyme disease patients. It is hoped that these guidelines will be presented to the CACLD for comment early in 2014, and will be given to the CMO for his consideration.
Some new activities of the CMO & his department for 2014
- a meeting of pathologists working on Lyme disease in Australia to bench mark laboratory processes.
- A meeting of medical practitioners (LLMD’s, neurologists, rheumatologists, GP’s etc) who are working with Lyme patients in Australia to discuss Lyme disease.
Nikki proposed that a Patient Reference Group be set up, so that the views of the increasing number of patient groups be heard, and so that information may be more easily disseminated through the Lyme community about the work of the CACLD and CMO on Lyme disease. Nikki proposed that the LDAA, KMF, BITE, MAD, Sarcoidosis-Lyme Australia, & the various support groups in VIC, ACT, NSW, QLD, and WA might provide a representative for this reference group. The CMO thought that this idea had merit and will explore the practicalities.
It was stressed that the CACLD and CMO needs to communicate to the wider Lyme community what progress is being made, and what are the next steps that they are working on.
It was also stressed that the need for prevention of tick bites is paramount, and the CMO will be putting links to this on the DOHA Lyme disease page in the near future.
If you have any questions, please feel free to ask – I’ll do my best to answer them ☺ Cheers, Nikki Coleman, patient representative, CACLD
Brief Interim Update on the Clinical Advisory Committee on Lyme Disease (CACLD)
Nikki Coleman, LDAA Patient Representative – 14 November 2013
The CACLD met last on 3 September. A summary of the meeting is provided on the Department of Health website.
As part of outcome 3, the Chief Medical Officer (CMO) convened a Diagnostic Working Group (DWG) whose purpose is to develop draft Diagnostic guidelines (a pathway) for the consideration of the CMO. To date we have provided significant briefing material for the working group. It recommended against the use of laboratory tests as the sole method of diagnosis for patients and provided supporting evidence demonstrating the importance of clinical symptoms in diagnosing Lyme. The DWG is expected to deliver the draft Diagnostic guidelines to the CMO shortly . Once Diagnostic guidelines are established, people who fulfil those guidelines should be able to obtain a faster and more consistent path to treatment.
To maintain a strong patient focus in the CACLD, we are still collecting factual discrimination stories from patients to present to the CMO. It’s important that we document and demonstrate the discrimination experienced by Australia Lyme patients. If you have a story to share, please tell us at email@example.com and if you need assistance in communicating your story, please let us know.
The next meeting of the CACLD is scheduled for 27 November, where I anticipate an update on the Lyme disease Scoping Study outlined as outcome 1 from Meeting 3.
Stand Up & Be Counted! (now closed – thank you to all participants)
You are invited to take part in the Lyme Disease Association of Australia’s
Our survey reports are used to help inform governments and the medical community about how Australians acquire Lyme disease and how they are being diagnosed and treated. We explore each of those issues as part of the survey.
If you completed last year’s survey, that’s great! The 2013 survey builds upon the data collected in 2012. We are aware that situations change for many patients and we’d like to understand what may have changed for you since last year.
Depending on your answers the survey will take around 15 – 20 minutes to complete. If at any time you need to exit the survey, you can come back to complete it later using the same link.
A summary of results will be available on here when data is compiled.
Will Your Doctor/Naturopath Help?
Please download and take these to your doctor – thank you in advance!
LYME Gala Dinner
It’s time to recognise Lyme disease in Australia
14 November, 2013
81 Bay Street, Brighton, Melbourne
Download flyer: LYMEFoundationDinner2013
Book now: www.trybooking.com/DHAJ
More details: firstname.lastname@example.org
Phone: (03) 9572 2972
Shine your #lymelight for Lyme Disease
#Lymelight October is all about creating fun and friendly events to raise awareness and funding for Lyme disease.
Public discussion, awareness and education are urgently needed. At the Lyme Disease Association of Australia we are responding to an average of 70 enquiries each week from everyday Australians who are in need of urgent information, help and support. Your #lymelight October event will make a difference. More importantly, your efforts will be very much appreciated by the thousands of people who are currently battling a challenging Lyme journey.
Check out this video to learn more
To receive a kit that would best suit your #Lymelighting needs, please email email@example.com
Lyme in The Australian
Updated Media Pack Available
Dr Bernie Hudson Article in Medical Observer
14th August 2013 “Currently, conventional thinking is that LB is endemic only in the northern hemisphere, although B. garinii has been detected in wildlife and ticks in the southern hemisphere.
Borreliosis is a general description of infection caused by Borrelia species, of which one subset is LB. There is an expanding range of Borrelia species associated with both LB and RFB.
It is likely therefore that new endemic areas will be described for these infections. The situation in Australia will be reviewed in a subsequent article.”
Ensure your treating physicians have been advised of this recent directive from the Chief Medical Officer, Professor Baggoley
The Chief Medical Officer, Professor Chris Baggoley has published a directive of Advice to Clinicians. This has arisen out of the initial review into Lyme Disease in Australia. You can read more about the CACLD at our website (http://www.lymedisease.org.au/news/).
The letter is formal written advice to Australian clinicians about the creation of the Clinical Advisory Committee on Lyme Disease (CACLD) and recommendation to physicians to treat Lyme in those infected overseas. http://www.health.gov.
New Version of LDAA Flyer
Lyme Disease Education Flyer
lymediseaseaa-2013-download: (updated 23rd August 2013)
Five Articles on Proof of Lyme in Australia (1982 – 1998)
Sourced via National Library by Nikki Coleman
These are difficult to find online – please find them here for your convenience:
- 1982 – Lyme Disease in the Hunter Valley; Med Journal of Australia - Lyme Disease in the Hunter Valley Med Jnl of Australia 1982
- 1986 – Lyme Disease on the SOuth COast of NSW; McCrossin Med Journal Aust - Lyme Disease on the South Coast of NSW McCrossin Med Jnl Aust 1986
- 1991 – Detecting the Cause of Lyme Disease in Australia; Med Journal of Australia - Detecting the cuase of Lyme disease in Australia Med Jnl of Australia 1991
- 1998 – Lyme Disease in Australia; Aust/NZ Journel of Public Health - Lyme Disease in Australia Aust NZ Jnl of Pub Health 1998
- 1998 – Culture Positive Lyme Borreliosis; Hudson Medical Journal of Australia - Culture positive lyme borreliosis Hudson Med Jnl Aust 1998
Lecture in Newcastle, NSW – June 11th
The Role of Infections in Chronic Illness
Professor Emeritus Garth Nicolson
The role of chronic bacterial and viral infections in neurodegenerative, neurobehavioral and other chronic illnesses
Prof Nicolson will present his research findings that show that chronically ill patients with neurodegenerative, neurobehavioral and psychiatric diseases and also other chronic illnesses where neurological manifestations are routinely found, such as fatiguing and autoimmune diseases, Lyme disease and Gulf War illnesses, commonly have systemic and central nervous system bacterial and viral infections. These infections include Mycoplasma species, Chlamydia pneumoniae, Borrelia burgdorferi, human herpesvirus-1, -6 and -7 and other bacteria and viruses. His data suggest that chronic bacterial and/or viral infections are common features of progressive chronic diseases. He will also present his research into the use of lipid replacement therapy in repairing mitochondrial damage seen in these conditions.
Flyer with full details: ProfGarthNicolsonFlyer20130611
Clinical Advisory Committee on Lyme Disease
- Meeting 2 (28 May 2013)
The Chief Medical Officer of Australia’s Clinical Advisory Committee on Lyme Disease met this afternoon.
Read full meeting notes here: http://www.lymedisease.org.au/news/
Lyme Awareness Saves Lives
NEW!! Bumper Stickers Available
To purchase, contact David at: firstname.lastname@example.org
Lyme Disease Education – download and share
Lyme Disease is the number one tick borne illness in the world, and is the fastest growing vector born illness. Lyme Disease is usually transmitted through the bite of a tick, and can cause mild, moderate or severe symptoms, and if left untreated can be fatal. Please download and distribute this flyer:
Lyme Disease Education Flyer
lymediseaseaa-2013-download: (updated 23rd August 2013)
Lyme Disease Facts A3 poster
LymePosterA3FINAL (right click/control click to download)
2011-2012 Australian Lyme Disease Survey
The Lyme Disease Association of Australia is pleased to present the findings of our 2011-2012 survey into the patient experience of Lyme Disease sufferers in Australia. Read the report here
Join the Sydney University Research Study
Join the Sydney University Research Study
The University of Sydney and the Karl McManus Foundation are conducting a research study into what pathogens are associated with Australian Lyme Disease. For more information see the flyer below or contact Dr Ann Mitrovic by phone (02) 9351 3217 or email: email@example.com