Living with Chronic Fatigue Syndrome

Living with ME can be severely life-limiting for those affected.

KT King, 46, from Hessle, explains what it is like living with myalgic encephalomyelitis, sometimes known as Chronic Fatigue Syndrome.

“I first became aware of ME aged 23 when I spent six months in bed after graduating university,” said KT.

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“I had already been struggling with chronic pain since the age of 19, and found I could not keep up with my peers when it came to energy levels.

“Following the worst relapse of my life in 2012 I was bedbound for three years, yet I was ignored by the medical profession, dismissed by GPs.”

KT King is one of the 250,000 men, women and children in the UK living with ME, a chronic, fluctuating neurological condition that can be severely life-limiting for those affected.

She explained: “I haven’t been able to have a family, I cannot date, I have no social life and no career prospects. I had to leave my job working at an international charity. I retrained slowly as therapist part time, but even after half a day’s work I was totally exhausted and in a lot of pain. I can no longer work. I had to sell my house.

“I used to try to keep fit and enjoyed the gym but went through periods of being too fatigued. I only realised in the last few years that my relapses coincided with trying to be more active and do more exercise.”

People with ME experience severe, persistent fatigue – very different from ordinary tiredness – associated with post-exertional malaise, the body and brain’s inability to recover after expending even small amounts of energy.

This leads to a flare-up in symptoms including chronic pain and difficulties with concentration, thinking and memory – known as brain fog – and problems with the nervous and digestive system. One in four people with ME are so severely affected that they remain bed or house-bound.

“At my worst, I’d have constant muscle pain and stiffness, exhaustion if I did anything for more than an hour, a fuzzy head and lack of cognitive function, headaches, nausea, and fatigue so bad I couldn’t shower, get dressed or feed myself.”

KT is sharing her story as part of Action for ME’s 2019 ME Awareness Month campaign, Are you missing ME?

Sonya Chowdhury, Chief Executive, Action for ME explained: “It’s so important to raise awareness and understanding of the impact of ME to tackle the ignorance, injustice and neglect experienced by thousands of adults, children and families, like KT, whose lives have been stolen by this horrible illness.”