A Dummies’ Guide to ME/CFS: Part I, Intro

It has come to my attention that while I write this blog from the perspective of someone suffering from ME/CFS, there may be many reading who are not entirely familiar with the disease. So I decided to write a guide to ME/CFS for the uninitiated, covering everything from symptoms to prognosis, treatment and research. I hope it will contain some information for the seasoned spoonie too.

I can’t pretend to be an expert – this series is based on my 6 years of living with the disease, as well as reading books by authoritative experts in the field and other research (such as patient surveys, ME/CFS organisations, news articles, books and journal articles). It is my experience that patients know far, far more about their illnesses than many medical professionals, solely based on their experience living with the illness 24/7.

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Inspiration porn, cripple punk and why I refuse to be grateful for my chronic illness

An enamel brooch in the shape of a love heart. The banner across the brooch reads
Disabled enamel pin. You can purchase from NormalLand on Etsy. Isn’t it perfect?

Today I’m sharing with you another piece I had published on The Mighty. Firstly, if you are a spoonie, or know someone who is, check that website out! It has contributions from people with all different abilities and illnesses speaking from the heart about their experiences. You’ll get lost in a rabbit warren of amazing stories, believe me.

After this piece was published, I received many comments complimenting me on my ability to make the best out of my illness. I’m not sure that was my intent when writing. Sometimes you have to laugh at the ridiculous situations your illness places you in (strolling naked along a hospital corridor after being showered by nurses? Anyone?), and I have grown as a person since becoming sick. However, this doesn’t mean I have to be grateful for my illness, or enjoy it.

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Beginnings

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More scenes from the Hopkins River

A post shared by Siobhan Simper (@siobhansimper) on

Above: my island home

Hello! And welcome. I’m Siobhan, a 20-something living in country Victoria, and I’ll be blogging about life with severe CFS/ME, with some fun crafty creations thrown in along the way. Having CFS/ME turned my life upside down, and yet severe cases are underrepresented in the media and popular discourse. I want to change that.

Without further ado, here is an unedited version of a piece which was recently published on The Mighty, about life with severe ME/CFS. Enjoy, and feel free to drop in anytime!

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