Severe ME: I Had To Fight The People Supposed To Help Me




by Sam* In ME Australia. 


Sam (*not her real name) is a teenager living in Australia’s largest city without access to treatment to help her. Sam was prescribed graded exercise therapy (GET) and cognitive behavioural therapy (CBT) repeatedly. After doing GET, Sam became housebound. Sam now has very severe ME and says even having a person enter the same room is “unbearable”. Despite having classic ME, she was taken to a psychiatric ward where she was threatened and kept from seeing her family. Here is her story.

In my last few months of primary school I came down with a particularly aggressive form of what I thought was tonsillitis. The throat pain gradually faded, but the symptoms were so severe I spent a lot of time bedridden.

My first few days of high school were spent with my head on the desk in near unbearable neck pain, coupled with crippling headaches. More and more symptoms started cropping up. Several months after that episode I had full blown fibromyalgia, resulting in constant pain in my neck, extreme exhaustion, and I felt as if I was in a dream. Physical therapy didn’t help, nothing relieved my pain, including pain medication.

Over the next few years the neck pain subsided, and almost every single symptom in the ICC criteria for ME took its place. Year after year things got worse. As the countdown to the new year approached, every year I vowed to have a better one.


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