Emerge Australia has announced champion of women Tracey Spicer AM as its new ambassador.
The respected journalist and campaigner, with a career spanning radio, television, and newspapers, is throwing her weight behind Emerge Australia, the national patient organisation that represents, supports and advocates for people with post-viral infections including Myalgic Encephalomyelitis* and Chronic Fatigue Syndrome (ME/CFS) and increasingly Long COVID.
Research is finding overlaps between the conditions with debilitating post exertional malaise (PEM), in which symptoms gets worse after activity, common in both.
Tracey has been battling Long COVID after being infected with the virus in January 2022. She is adding her voice to the call for more support, research and timely diagnosis and treatment.
“We must do better. The medical system is set up for life and death but people with these conditions are often not taken seriously and viewed as malingerers,” she said. “ME/CFS predominantly affects women, so there’s a history of sufferers being seen as mentally rather than physically ill.”
Emerge Australia chief executive officer Anne Wilson said it was timely this week, with International Women’s Day falling on Wednesday, March 8, that Tracey, a great champion of women, has come on board to shine a light on the these “invisible illnesses”.
“More than 250,000 people are living with ME/CFS and about 75 per cent of them are women,” Ms Wilson said.
“The research suggests up to 320,000 people will have Long COVID which means there will be a whole new cohort – many of them women – who will need help.”
Tracey Spicer hesitates when she tries to put into words just how dark some days were when her symptoms were at their worst.
“It feels like a living death. Every time you try to sit up, stand up or expend energy you feel like you are dragging this body around that is unwilling to move,” she said.
“I know people experience it at different levels.”
The virus hit her like a “freight train” and left her bedridden for two weeks but worse was yet to come.
She lost her taste and smell, felt fatigued, experienced chest pains and palpitations, and struggled with debilitating brain fog.
Tracey was triple vaxxed and fitter than she had been for a long time, training for a hike and a charity walk.
On the road to what she thought was recovery, she did a few gentle walks with the dog and built up to a reformer Pilates class but was unable to complete it.
“My heart goes out to younger people with ME/CFS or Long COVID who are being gaslit by medical professionals. It is incredibly frustrating to be told there is nothing wrong with you.”
Tracey has researched widely on the issue and used the Emerge Australia website to land on some things that help her manage her condition.
While not offering medical advice, these have included use of anti-inflammatories – by tablet or diet – and anti-histamines. She has found mindfulness, meditation, and yoga beneficial.
“Pacing was phenomenal for me. To build up in short snatches.”
“The main thing that helped me was radical rest. Getting horizontal rest whenever I could.”
Tracey has called for better education of doctors to ensure timely and accurate diagnosis.
“There are so many people in the community who have Long COVID or ME/CFS, and are disbelieved by their family members,” she said.
“They are lost and in this liminal space. It must be terrifying. Countless people in marginalised communities are not being supported by the health system.”
Tracey said these invisible illnesses take an enormous mental health toll.
“Fifty per cent of the time you are not being believed. You become quite isolated.” “With a diagnosis like this you can’t do anything that gives you joy in life.”
Tracey said successive governments have been “incredibly neglectful”.
“They have put it in the too hard basket. That is short term thinking. If people are not being diagnosed and treated they will get sicker and be more of a burden on the health system.”
• Pronounced as my·al·gic en·ceph·alo·my·eli·tis
Access to Tracey
As Tracey manages her illness there is limited availability to organise interviews.
We have a video which can be used for footage and grabs and some photographs of Tracey.
Tracey may be available for email interviews. Please reach out if you may be looking to speak to Tracey or Emerge Australia CEO Anne Wilson and we can try to make something work.
Please contact Claire Heaney on 0421 612 507 for more information or Visit Tracey’s website today – http://traceyspicer.com.au/
