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Dear Lymelighter,
 


Government funding misses the mark

Local and international Lyme disease experts have expressed dismay at the news of the funding allocation with more than 4,000 Australians with a serious Lyme-like illness unable to gain access to adequate health care.

Funding has been allocated to a project proposed by Murdoch University and a second project from the Austin Hospital which will focus on psychiatric therapies for patients suffering debilitating symptom attributed to ticks - the studies will take up to five years to complete.

Neither of these projects offer immediate support for sick Australians nor address the very real and urgent problem the Senate highlighted when they recommended the Government invest research funds into "patient-centric" outcomes. 

The Lyme Disease Association of Australia (LDAA) supported a research submission by Professor Gilles Guillemin, which proposed a personalised medicines model, in collaboration with doctors in Australia including Dr Richard Schloeffel OAM, Dr Bernie Hudson, Royal North Shore Hospital and esteemed scientist Prof Edward Holmes. The project would have been the first to establish a nation-wide comprehensive biobank of Lyme-like illness samples and would have provided answers for patients quickly.

“We were extremely saddened to hear this announcement regarding the non-funding of the proposed biobank project,” expressed Dr Richard Schloeffel, OAM.

Doctor Armin Schwarzbach of ArminLabs Germany has already analysed hundreds of Australian samples which are positive for infections with Borrelia burgdorferi and strongly recommends the biobank strategy for Australian samples. “We need to start systematically testing samples from all Lyme-like illness patients in Australia and getting to the bottom of this illness”, says Dr. Schwarzbach.

President of the LDAA, Ms Huttley-Jackson added “None of these initiatives address tick bite awareness and prevention, so the number of Australians who become sick following a tick bite will continue to rise unchecked."

“Historically, there has been a lot of misinformation around Lyme-like illness in Australia, and $3M in funding provided to programs that address only part of the issue is woefully inadequate." concluded Ms Huttley-Jackson.  Read the LDAA response to the allocated $3M funding.



“I have had CBT therapy some years ago. Let me see....

If I worried that I had an illness that was not recognised, that was catastrophising, being too negative. I was told I needed to reframe that to something less drastic eg. 'Currently I am suffering but something might soon change and then I would be able to recover my life.' 

If I worried that our politicians wouldn't help, again, catastrophising, 'reframe to a more positive mindset'.

If I worried at all the incredible expense of treating "chronic fatigue syndrome" was yielding no worthwhile results, again too negative... reframe... etc etc etc.

Newsflash: reframing hasn't changed a thing and I am currently only a few weeks aways from 40 years of illness without a well day. It has cost more money than I can stand to think about to keep me functioning at an extremely low quality of life, and my illness cannot be treated by any old GP (or even a close one without ridiculous waiting lists) or hospital.

I still live in a country where politicians will fund CBT (Can't Be True that we are sick) and a paltry amount to still just look for pathogens (read: chance of any legislation really helping me in my lifetime now infinitesimal).  I still have to wait while multiple governments come and go, including a double dissolution and multiple changes of Health Ministers, and then changes of senators who were cognisant of the Senate Inquiry.

You know what, I try daily not to let bitterness get to me, but this CBT nonsense is truly the last straw. I AM ANGRY NOW.”
~ Jenny Taylor

This so accurately reflects the hundreds of posts, emails, messages and comments from patients and their families around Australia.   Thank you to Jenny Taylor for expressing so well the outrage that Lyme patients feel at a full third of the NMHRC funding being allotted to a psychiatrist who specialises in CBT.

 
In light of the lack of support given to our preferred model, led by Prof Gilles Guillemin and his esteemed team, for the grant application submission to the National Health & Medical Research Council (NHMRC) Targeted Call for Research (TCR) into tick borne diseases, the LDAA is now seeking alternate funding for our Scientific Advisory Committee (SAC) and Biobank.

We were shocked that highly respected clinicians and scientists, with impeccable track records and with former applications to the NHMRC (some with a long history of treating Lyme disease patients) were unsuccessful for this particular NHMRC TCR funding which clearly and precisely addressed each selection criterion. However, we do not want patients to despair.

Our focus is to remain steadfast in our commitment to fund this model: We will now establish a national funding consortium that could be extended into a global funding consortium (if there is alignment and interest in other countries) to become part of the collaboration and model.

Prof Guillemin, Prof Eddie Holmes, Dr Richard Schloeffel and Dr Bernie Hudson along with many other respected international collaborators including Dr Horowitz (our Patron), Dr Armin Schwarzbach and Prof Pierre Cosson (who recently led the French Government-funded Tick Tracker App scientific consortium) were involved in the supported submission. 

We want to reassure Australian patients that this is a robust model and, along with our international friends and colleagues, we invite you to collaborate with us, share your ideas, provide suggestions, suggest worthy collaborators and become a collaborator.  Every little bit helps.

If you would like to get involved, a committee to pursue this project is now being formed.  You can contact us to help this model get off the ground.

This CAN be achieved without government funding! However, we will continue to pressure the Australian Government to contribute to the only model which will deliver solid outcomes for patients.

We look forward to hearing from you and look forward to 2019 being the year that Lyme patients in Australia kick some fantastic goals.
 

Natural medicine has been a game-changer for many Lyme patients. Whether used as stand-alone treatment or as an adjunct to pharmaceutical treatment, nutritional and herbal protocols have been very effective for many. Metagenics, a multinational company that supplies natural medicines to practitioners, is running a natural medicine clinic program. Naturopaths will use Metagenics supplements to support people with pain and inflammatory conditions, whether or not they are also using pharmaceuticals.

Although this is not a Lyme-specific clinic, and the naturopaths involved may or may not be Lyme aware, the treatments may offer relief from inflammatory symptoms. And it’s free!


Metagenics Research Clinic is currently seeking participants with chronic pain or an inflammatory condition for a Natural Medicine clinic program commencing late February 2019* 

  • Arthritis 
  • Chronic Back Pain 
  • Fibromyalgia 
  • Rheumatoid arthritis 
  • Inflammatory bowel disease 
  • Psoriatic arthritis 

We would like to hear from you!

The clinic is aimed at utilising Natural Medicines to support people with pain and inflammatory conditions with or without current pharmaceutical management.

If you are interested in Naturopathic advice and products AT NO COST, please contact techadmin@metagenics.com.au by February 15th 2019. 
*Participants must be able to attend fortnightly appointments within business hours in Brisbane or Melbourne.


Have you been told by your doctor it's all in your head?

 
We are looking for patients who are willing to share their stories on their experiences with doctor's treatment, especially stories of being dismissed as having symptoms that are 'all in your head'. These stories will be compiled to be presented to Minister Hunt. Are you prepared to share your story? If so contact us so we can add your voice.
 

Stand4Lyme Foundation
 

In Stand4Lyme Foundation's video, scientists tackle the Lyme disease epidemic. Experts address the serious consequences of Lyme and tick-borne diseases, an increasing source of morbidity and mortality worldwide. Stand4Lyme makes a clear business case for pharmaceutical support and federal research funding to develop reliable diagnostic tools and accessible effective medical treatment. The goal of this video is to help educate all stakeholders from a scientific perspective and garner increased government support and funding. Watch the video here

 


Some valuable blog posts this month

Remember to regularly check out our blog, there's a breadth of information and education for you. This month we've published:
  • Outbreak of Ticks in Australia - An article on an outbreak of ticks in Australia in the "Your Local Families Magazine"; Warning to Parents.
  • Irish Farmer Gets Lyme - A recent interview in the Irish Examiner about a farmer from Inishowen (a peninsula in the north of County Donegal, Ireland) who had been diagnosed with Lyme disease said “I wouldn’t wish this on my worst enemy".
  • Early History of Lyme Disease - Dr Joseph Burrascano, an expert on the diagnosis and treatment of Lyme disease, is a founding member of the International Lyme and Associated Diseases Society (ILADS). In this video interview he discusses the history of Lyme disease and how he became involved in the Lyme world.  He also acknowledges that he himself has had Lyme disease. 
  • I'm not Convinced - By Catherine Stace - The three dangerous words that preside over the future of Lyme disease in Australia.

 
  • Petrisse Herbert - 'Riddled' with pain, but government does not accept diagnosis of "locally-acquired Lyme disease"
  • Carpet Python found in a Gold Coast pool with more than 500 paralysis ticks attached to its body.
  • Didier Cohen reveals how he overcame Lyme disease diagnosis.
  • $1.9M grant to Cryptick team - Channel 9 Perth reported on the Government grant to Prof Peter Irwin, Dr Charlotte Oskam and team at Murdoch University.
  • Dismay over $3M dollar research allocation by Lyme Disease experts.
  • Warning to parents - outbreak of ticks in Australia. Australian doctors and health care professionals are imploring parents to CHECK CHILDREN CAREFULLY for ticks.
  • $3M Dollar Funding Allocated - It’s official: the Australian government has committed $3 million for two studies over five years.
  • Thalia Sodi Miranda - The Mexican singer, songwriter, producer, actress and entrepreneur shares her personal story with Lyme disease and calls for more accurate testing.
  • 16 Constructive ways to communicate your health needs during the holidays.
  • Milford scientist suing CDC over Lyme test - A Connecticut scientist is suing the Centers for Disease Control and Prevention (CDC) for $US57 million. Dr Sin Hang Lee says if he wins, the money will be used to create Lyme disease testing laboratories throughout the US, so people can be accurately tested for Lyme.
  • Avril Lavigne - "At one point I thought I was going to die."

We would  like to encourage you to become a member of the LDAA if you’re not already.

It's easy and free and you simply fill in this form.  Members are eligible to vote in the elections of LDAA Board Members.
 
The LDAA works tirelessly in the pursuit of seven key areas:
  • Advocates for individuals and families living with Australian Lyme and associated diseases with governments, doctors, and local communities;
  • Facilitates world’s best practice patient care and support;
  • Represents the perspective, lived experience and interests of the Australian Lyme patient community;
  • Acts as a conduit between international developments, research, treatments, and other Lyme communities;
  • Fundraises to facilitate improvements for people living with Australian Lyme and associated diseases by supporting the education of doctors and other health professionals;
  • Fundraises to support research and innovation in epidemiology, diagnosis, and treatment of Australian Lyme and associated diseases;
  • Educates the public and medical sector about the risks of Lyme disease and the need for early diagnosis and treatment (early detection makes this an easily treatable disease).
Your support is invaluable in assisting us to achieve real change for current and future Lyme patients.



Community News & Events


AmpCoil Event
Saturday 16th February, 1-5pm, Sydney. FREE event.

Founders Aaron & Geneva will share their personal experience with Lyme and how AmpCoil changed the course of their recovery. Learn more about AmpCoil's vision for the future, and sharing this technology in Australia.


Sunshine Coast Event - Stories of Hope
Thursday, February 28, 2019 at 6:45 PM – 8:45 PM

Kerrie Atherton, founder of Stories of HOPE Australia and EMPOWER Life Solutions has been working with individuals and families for many years now helping them through traumatic events in their lives and empowering them through counselling, therapy and community connection to find healing, purpose and HOPE. Lyme patient Trudi Bareham will be sharing her story.  More details. Buy tickets.
 
LDAA Chrysalis Support Group – NEW VENUE
Chrysalis meetings are held on every third Saturday of the month from 2-5pm at the
Cockburn Integrated Health meeting room 11, Wentworth Parade, Success, Western Australia (please NOTE change of venue). Contact Ailsa for more information  Facebook   Email

ROARR Community Event
30th March, 2019

The "Stand With Us" Campaign is a campaign for the recognition, adequate diagnostics, and treatment of Lyme Borreliosis and tick-borne diseases.  This is a global organisation and a campaign is currently being planned for 30th March, 2019 as a day to participate in ROARR.  Follow the link to find out more.

 

 
 


Following the Senate vote to extend the opt-out period, the Minister for Health has announced that the opt-out period will be extended until 31 January 2019. The opt-out Website and the Help line will be available until 31 January 2019. 

Click here for more information
 
 

Volunteer With Us

 
Join our wonderful volunteer team! The LDAA works in a virtual environment and it's busier than ever!  You must have access to a computer, a stable internet connection, and have a passion to enact change in your community!  LDAA's roles are expanding; often volunteers contribute to ad-hoc projects beyond their initial involvement. 
 

Our vacant volunteer positions are:

  1. Fundraising Volunteer | This person will work with the Board in developing an annual fundraising calendar and giving programs. Experience with writing grant applications would be an asset.
  2. Media Volunteer | We need a passionate individual to work with communications and media engagement. This person would work directly with the Social Media Manager and CEO.
  3. Community Liaison | This person is committed to making a difference. This role will include monitoring events, including liaising with support groups and developing systems. 
  4. IT Manager | Wordpress maintenance with some database work (full position description available on request) - let us know if you're available!
  5. Finance Assistant | This volunteer will have a flexible schedule and will work closely with the Treasurer and Secretary and will require administration skills.
It's a positive team environment and we love collaborating to spearhead change for Australian Lyme patients. Introduce yourself by sending us a message via our contact us form!  We look forward to speaking with you!
 

From the Committee

 
Happy New Year from us to you!   We hope you had the best festive season possible.  We'd like to offer our gratitude for all of your support for our team's break during December-January.  While we share the impatience of 'let's just get going', we've only had supportive comments into our Facebook and email inboxes, thank you!

If any patients or able-bodied friends and family would like to see change happen in Australia during this powerful election year, please contact us.  Even small tasks done regularly supports the backbone of this patient-lead organisation.

The board will meet early in February, develop some options and connect with the community for alignment on the way forward together.
 
'It takes a village' :-)
Yours in Green, 

Marie Huttley-Jackson | President
Lyme Disease Association of Australia

Disclaimer: Any content within this newsletter is not intended to be a substitute for professional medical advice, diagnosis, or treatment, nor as an endorsement from the Lyme Disease Association of Australia (LDAA).

    
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