Published: 9 September 2023
In August Emerge Australia CEO Anne Wilson spoke with ABC Journalist Evan Young for his article detailing how ME/CFS is nothing like the tiredness that many people experience in their daily lives.
Ms Wilson spoke about the lack of visibility and often understanding of people living with ME/CFS. Despite the debilitation, advocates say patients’ struggles are routinely underestimated.
“The [symptoms are] all things that when you meet someone, you just don’t see,” says Anne Wilson, CEO of ME/CFS non-profit Emerge Australia.
“That is why so many people feel that, first of all, others just don’t get them, but secondly, they’re not believed and … made to feel as if they’re making it up.”
ME/CFS and more severe cases of Long COVID have been likened to “a living death”, Ms Wilson says.
“That’s because of the inability to continue with the rest of your life: to work, to earn money, to continue your studies, to continue to go to school, for parents to continue to parent.”
“People with ME/CFS and Long COVID … cannot continue to be ignored in the health system,” Ms Wilson says.