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Severe ME Left Me In A World Of Pain And Darkness. 26 Years On, Why Is It Still So Poorly Understood?

Tuesday 27 December 2016


From openDemocracy:


Night Window
Night Window. Flickr/Colin Hughes. Some rights reserved.

Severe ME left me in a world of pain and darkness. 26 years on, why is it still so poorly understood?

By Naomi Whittington
19 December 2016

We need to draw attention not only to the illness itself, but the political neglect that allows it to continue destroying lives.

I live in a world largely hidden from view. Most of my neighbours do not even know that I exist. I was last seen as a child walking home from school 26 years ago. In the decades since, I have rarely left my house; when I do, it is in a wheelchair.

Myalgic encephalomyelitis (ME) struck suddenly for me, with a viral infection, although for some the onset is more insidious.

Within a few months, it had stripped me of the ability to walk or talk, to move my arms or to open my eyes. It entombed me in such agonising pain that life was reduced to the drawing of each breath. My family and doctor expected me to die at any time. I survived, but for years it was a living death. I was too ill to tolerate any stimulation, and knew nothing but pain and complete darkness.

My personal experiences have moved me to campaign for greater awareness of an illness that affects an estimated 250,000 people in the UK, and millions worldwide. ME has been recognised as a neurological condition by the World Health Organisation since 1969. Symptoms include overwhelming fatigue made worse by exertion, pain, sensory sensitivity, sleep disturbance and cognitive dysfunction. The level of severity varies greatly between individuals, with most sufferers able to maintain a degree of presence in the outside world.

But severely affected ME sufferers “are similar to a critically ill patient 24 hours before they die, except they live like that for years and years,” professor Ron Davis of Stanford University, one of the world's leading scientists in this field, told me. Known internationally for his work on the Human Genome Project, Davis has now set his sights on discovering the causes of ME, and ultimately, a cure.

The use of the name “chronic fatigue syndrome”, and the adoption of indistinct diagnostic criteria, has allowed ME to be swept under an umbrella of generalised fatigue states. “The medical profession has largely ignored this disease,” Davis told me. “This is the last of the world’s major illnesses to be so poorly understood.”


Full article…



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