Toxic Mould Support Australia is an informal support group that began life on Facebook by Jason in October 2013. Our mission is to raise awareness throughout Australia and New Zealand of chronic inflammatory response syndrome (CIRS), aka Mould illness, as well as other biotoxin illnesses, and to provide support to patients.
Facebook group founder & administrator
Created group 26 October 2013.
I got acutely sick in 2011 due to a plumbing leak between my bathroom and bedroom that led to the highly toxic mould, Chaetomium globsum to flourish, a mould that only comes from serious water ingress. I was so sick that I ended up in hospital with toxic bands/changes in my neutrophils. Since then I’ve battled to regain my health due to dodgy HLA genes which means I don’t self-heal and I now react to mould like Superman does to kryptonite so find most abodes intolerable. It has also left me with cognitive and short term memory issues and a very abnormal NeuroQuant brain MRI to back this up along with other scans, plus a plethora of other symptoms which has meant I’ve sadly had to close my business.
Facebook group administrator
Joined group late 2014. Administrator late 2014 to present.
I developed Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) while working in London in 2000 after a flu-like illness while living in a damp apartment. With increasing symptoms of chronic fatigue, post-exertional malaise, insomnia, brain fog, and flu-like sypmtom, I returned to Australia and embarked on a journey which saw me consult dozens of health practitioners, thousands of tests, and hundreds of different therapies, both mainstream and non-mainstream. I was finally diagnosed with CIRS in early 2015 and embarked on the Shoemaker protocol shortly after. I had first encountered the work of Dr. Ritchie Shoemaker when a friend lent me Mold Warriors in 2006 but as no testing was available then I was unable to interest any doctor in the protocol. I believe that exposure to mould and CIRS triggered, or was a factor in developing ME/CFS, but despite mould avoidance and going through the Shoemaker, and many other protocols, I remain disabled with ME/CFS. I do, however, need to avoid exposure to mould and water-damaged buildings as much as possible. My CIRS/CFS story can be read in my submission to the 2018 Biotoxin Inquiry [download PDF].
Sean Di Lizio
Facebook group moderator
Research & website contributor
Joined group 30 August 2019. Moderator August 2020 to present.
My CIRS story is published here: The Good News Is Your Illness Isn’t Real. After my own experience of struggling to find medical help, I wrote a brief scholarly review to help potential CIRS patients receive proper testing and referrals, and this eventually morphed into a number of related projects. I worked with Dr Cheryl Harding of CUNY (with some assistance also from Sharon Noonan Kramer and Erik Johnson) to write a section on Wikipedia detailing the science on how mould and other biotoxin formers can cause innate immune activation. More recently, I worked as the lead author with Caleb Rudd on CIRS Explained and our Science Primer—both of which I’d still direct any new CIRS patients and their support network to. With Macquarie University’s Professor Gilles Guillemin, I helped to write a grant application that won funding from Australia’s NHMRC for further research into CIRS. Despite the negative effects of this illness upon my life, I count myself lucky to have met so many other wonderful patients, advocates, doctors, and researchers as a result.
Facebook group moderator
Joined group late 2018. Moderator August 2020 to present.