May 12, 2025
ME/CFS Awareness Day
It's International ME/CFS Awareness Day today. Our Community Manager, Maddy, opens up about what it's like to live with ME/CFS.
It's International ME/CFS Awareness Day today. Our Community Manager, Maddy, opens up about what it's like to live with ME/CFS.
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ME/CFS is a tidal wave, it completely sweeps you off course and drags you into the deep. I’ve been living with this condition for 13 years, but it’s consumed so much of my life that it’s hard to remember what it was like before.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex neurological and autoimmune disease that affects every body system and has no cure or treatments. Cisgender women and other people assigned female at birth are far more likely to experience ME/CFS. Research has been consistently underfunded, despite the prevalence of the condition and the high disease burden. The medical world doesn’t understand it yet and many healthcare professionals don’t believe that it’s real or assume that it’s psychosomatic in nature.
ME/CFS makes my life small and leaves me feeling like I’m trapped inside my own body, screaming and banging against the walls, but no one can hear me. I look well to the outside world, but my body feels like it's dying everyday.
One of the hallmark symptoms is severe fatigue not improved by rest. In other words, every single day of my life, I’m tired. The exhaustion is so debilitating that I never get used to it. When I don't rest and push myself past my limits, I end up in bed for days with extreme fatigue, weakness and flu-like symptoms.
I’m tired of being tired and I’m tired of being endlessly unwell.
I’m tired of cancelling plans and missing out on my own life.
I’m tired of being dismissed by healthcare professionals who refuse to listen to me.
I’m tired of waiting for action. I’m tired of being forced to do my own research on ME/CFS because the medical world hasn’t caught up with the scientific research. I’m tired of waiting for research to lead to a treatment.
I’m tired because so many people have been suffering for so many years — my experience of the illness is mild compared to people living with severe ME/CFS who are unable to tolerate light, sound or movement and rely on carers to survive.
I’m tired because we’re living in a time where spreading COVID-19, a virus that irreversibly damages people’s health in a similar way to ME/CFS, is normalised and people are at risk of developing ME/CFS from Long COVID everyday.
ME/CFS Awareness Day isn't just a day to raise awareness, it's an opportunity to call for action. People living with ME/CFS are suffering in silence and we need action now. We need help today.