CFS/ME: The Walking Wounded

CFS/ME is a generally accepted term coined for the similar and combination illnesses of CFS (or Chronic Fatigue Syndrome) and ME (Myalgic Encephalomyelitis); the term walking wounded pretty much speaks for itself because it’s an all too accurate description of the life lived by the people who are so severely affected by CFS/ME.

And such is the language used by Criona Wilson, mother and caregiver of the now deceased Sophia Mirza, the first recorded case of someone dying from ME (CFS/ME) in the UK.

(6 minute 30 second audio)


At age 32… Sophia Mirza lost her life to ME – the first time the condition was recorded as an official cause of death in the UK. Read the story where Criona Wilson talks to a reporter about Sophia’s excruciating final years and the torment they suffered at the hands of a health profession that didn’t know how to treat her illness.

As a former midwife and qualified nurse, Criona Wilson says that if there’s one thing she knows about, it’s illness. ‘There’s a rhythm to sickness, to getting better,’ she says. When her youngest daughter mysteriously became unwell, she had a feel for the diagnosis. ‘Although I’d never nursed anyone with the condition before, looking at Sophia I said, “I think you have ME.”’

Eight years later, in 2006, the inquest of Sophia Mirza dramatically supported her mother’s instinct. The coroner ruled that the 32-year-old had died of complications due to myalgic encephalomyelitis, a landmark verdict in the UK. A neuropathologist told the court that Sophia’s spinal cord was inflamed, with three quarters of her sensory cells displaying significant abnormalities. Yet, as Sophia’s treatment by the medical establishment had underlined – she was forcibly sectioned (committed) for a spell in 2003 – many doctors handle ME (also known as postviral or chronic fatigue syndrome), as if it were a mental condition.

I can relate to that remark. Can’t you? All people who are severely ill want to be listened to, want someone to take them seriously. And… they want to get well and leave the illness behind them.

Criona describes her daughter as (the) walking wounded at that stage: able to potter (putter?) between bedroom and bathroom, able to lie on the living-room sofa. With support from her GP, Sophia applied for disability benefit and was given a council flat in a high-rise block nearby. It was glaringly bright and noisy. Ten weeks after moving in, Sophia was bedridden and Criona moved in to care for her. ‘I had never known anyone with such hypersensitivity to everything. She went through all the stages people do – hoping to get better, helplessness, anger.’

She recalls the first signs of the drawn-out illness that changed everything in 1998… .

Sophia caught malaria while traveling in Africa; then, while living in London, ‘she got flu and I went to see her. She suggested we went to a café down the road and she was walking like a 120-year-old woman. But she got better. It was flu at that stage. The following year she got it again. I went to collect her and halfway back she said she couldn’t continue, the car was making her desperately ill. We were stuck in a lay-by for a couple of hours, and then I got her home to Brighton and she lay on the couch and that was that: she never did anything again.’

Read more about this fascinating mother and her deceased daughter, Sophia Wilson, the first case of someone dying from ME at the DailyMail.

Today I read this account of Criona Wilson and Sophia Myrza and know that a part of me was there. I suffered badly, too, for a long time with Chronic Fatigue Syndrome (and Fibromyalgia). But I also know that I did not go through what Sophia endured. Sick and hurting beyond human tolerance, she was virtually abandoned and left to die by the UK health system. Her mother was her only supporter and caregiver.

I encourage you, as a friend, caregiver, doctor or health official, if you can reach out to a CFS/ME sufferer and tell him or her that you’re there to support them, it will make a world of difference. If you can reach out to help, do it. If you can make a difference and improve the health system, do it. Let’s stick together, speak out and demand better health care through 1) recognition of the illnesses, 2) more compassionate care, 3) better answers for getting over the illness and 4) for the ways and means for people to be able to resume healthy lives. The time has come to act.

I truly think that the health services of the UK should really be ashamed of themselves. Putting such exclusive emphasis on the “mental” components of the CFS/ME only serves to pidgeon-hole it and allow “you” to shirk your responsibility of providing care, through the very real medical side of this complicated and tragic illness, for the people who suffer with it. Where is your common decency to the walking wounded? If this illness afflicted you or someone you love, you’d be singing a different song entirely.

Thanks for listening. Please leave your comments below, Cinda Crawford
Host of the Health Matters Show and creator of Sacred Cellular Healing

Tagged as: cfs, cfsme, Chronic Fatigue Syndrome, me, Myalgic Encephalomyelitis, Sophia Mirza, walking wounded