In April 2025 a story about ME/CFS was in the mainstream media. You can read it here.
It was a good, relatable story. One quote that stuck with me was “a graceless manager who refused her request to work some days from home because it would be ‘unfair’ to her team”.
Because OOOOOF been there. Nearly identically been there; there are sadly lots of managers who need to stare at those equity vs equality memes to learn what the fuck fair means.
“Just 3% of MECFS patients surveyed by Emerge Australia in 2019 said they were able to access the NDIS”.
We are ABANDONED by the government.
And this story is full of support and best case scenarios. Most of us can’t get this far because we get no support. Governments and professional bodies have failed us, and in Australia, still try to actively harm us. The palatability problem also comes in here, because as I mention in that post, people won’t celebrate someone moving from bed bound to house bound. That’s not socially acceptable, socially palatable, enough for the media.
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