Change for Me is an online collective. Amara and Lee met on
Facebook in 2010 and over time developed the idea of a small group that could
assist fellow neuro-immune disease sufferers in practical ways. In 2012 Ann and
Mel came on board to form the core of the Change for Me and with
their help the collective was born. Since that time a small number of dedicated
helpers have been slowing plugging away to bring our plans to life.
Amara is severely disabled with multiple conditions. She was first diagnosed with Myalgic Encephalomyelitis (otherwise referred to in Australia as ME/CFS) in 2001. Without the funding to be able to fully explore nor treat her illness properly, Amara’s immune system was dramatically battered and due to years of prolonged chronic illness she has developed numerous co-infections and comorbidities. Amara has Lyme Disease, Babesia, Weil’s Disease, indicators of Sarcoidosis, Barmah Forest Virus, Neurally Mediated Hypotension (NMH), Dysautonomia, IBS, Multiple Chemical Sensitivity (MCS), Fibromyalgia, Endometriosis, Polycystic Ovarian Syndrome (PCOS), Asthma, Bronchial Spasms, Tics, Tourette’s, Dystonia, Cyclical Vomiting Syndrome, Seizures, Cataplexy, Thermodysregulation and numerous other complications that interfere with her life and make every day complicated and challenging.
In a former life Lee worked in graphic design, music and photography. He was outgoing and an active gym goer with a zest for life. In 2007 Lee began to experience a range of odd symptoms such as dizziness, loss of balance, dyslexia, headaches and fatigue. His doctor at that time could find no cause for the symptoms and suggested they there were not connected. During the following two years more symptoms developed until in October 2009 Lee collapsed at work with what felt like the worst flu imaginable. Lee never again was able to return to work.
In December 2009 Lee was diagnosed with ME. Over the next 6 months his functionality became more and more diminished until he became totally house bound and reliant on his elderly parents for his most basic needs. Since that time Lee has also been diagnosed with Toxic Encephalopathy, MCS, Fibromyalgia, Lyme Disease and Familial Mediterranean Fever. On bad days Lee is now unable to leave his bed and good days he spends on the couch with his laptop.
Melinda is a mother of two daughters, she has had multiple symptoms since 1997, when her children were 3 & 4. Melinda and her husband owned an art gallery and she was also a colour consultant and interior stylist up until 2008, when her symptoms became too much and consequently they had to close their business. It was then after 11 years that she received a Fibromyalgia and ME & CFS Diagnosis. In 2011 she was finally diagnosed with Lyme disease. It’s been a daily struggle for Melinda but she remains hopeful that she will one day regain her health.
Ann has a background in communication and patient involvement in health technology assessment (a process by which health system’s systematically review evidence to decide what to fund). While she has a passion for incorporating patient experiences in evidence-based healthcare, she is deeply concerned about those who fall through the cracks. What happens when someone is suffering with a condition where there is much uncertainty about the cause and treatment? Ann wanted to provide practical support to those whose needs go largely unmet, so when her old friend Lee approached her about forming Change for ME, she was honoured to become its Secretary.
Karyn (web content research), Keiryn (research), Mark (printing and
making stuff), Alanah (webmaster), Troy (original website concept).
Change for Me has raised funds to help other similar organisations and would like to thank these fundraising champions:
Trish Wright and Suzanne Scott (3 peaks cycling challenge fundraiser)
Joe (Bridge to Brisbane fundraiser & school market stall fundraiser)