From the Mail on Sunday – ‘You' magazine, 15 May 2010 (Story by Louette Harding)
Aged just 32, Sophia Mirza lost her life to ME – the first time the condition was recorded as an official cause of death in the UK. Here, her mother talks to Louette Harding 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, Sophia Mirza’s inquest 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 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 failed to stop the doctors from sectioning her. She told me she wasn’t going to a mental hospital willingly’
‘I failed Sophia big-time,’ Criona says in her soft Irish accent. ‘I failed to get the correct treatment for her. I failed to stop the doctors and psychiatrists sectioning her. But now I’ve got nothing to lose. Nobody can hurt me any more. My daughter is dead; I cannot get her back. I don’t have a job. I have no home of my own. I have no savings. They can’t take anything from me. Therefore I’m free, I’m free to speak out. It’s going on with other people and it’s got to be stopped.’
Slight, in ill-health and living in a Brighton council flat, 66-year-old Criona makes an unlikely campaigner, as she is the first to admit. ‘People see me and make assumptions. I can’t blame them. I don’t look like the sharpest knife in the drawer. My son thinks I resemble an arthritic orang-utan,’ she adds at one point, halting our interview to stand and stretch her stiffening joints.
The recent case of Kay Gilderdale, who admitted assisting the suicide of her daughter Lynn, reignited the controversy surrounding ME. When Mrs Gilderdale was acquitted of murder at Lewes Crown Court earlier this year, Criona was sitting in the public gallery. ‘I have a great deal of time for Kay. I think she is a very good person and a very brave mother.’ Lynn Gilderdale had told her parents that she wished to die because of her constant suffering from severe ME, which had left her unable to feed herself or even to speak. Her experience had many similarities with that of Sophia, who was a spirited and gifted young art graduate until the condition reduced her horizons to the drawn curtains of a darkened bedroom.
‘When they were born, people said to me how beautiful they were,’ Criona says of her four children by her Pakistani ex-husband. ‘It didn’t occur to me because it was character that was important. Looking at Sophia’s photograph now, I see she was beautiful but she never traded on it. She was kind and funny. In the pub one day, this big man was kicking his dog. She went up to him and said, “If you hurt the dog again, you can come outside with me.” He didn’t kick the dog after that.’ Criona’s smile wavers. ‘I don’t talk about Sophia often.’
She remembers the first signs of the drawn-out illness that changed everything in 1998. Sophia caught malaria while travelling 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.’
‘I listened to her because she was a young person who desperately wanted to get better’
Criona describes her daughter as ‘walking wounded’ at that stage: able to potter 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.’
Sophia instituted a regime designed to help her body recover. She ate only organic food, the amounts recorded in a page-a-day diary and adjusted according to her reactions. Unable to stand light or noise, she used a wrap for her eyes and ear plugs, and Criona put up heavy black velvet curtains. These were extreme measures but, says Criona, ‘I listened to her because she was a young person who desperately wanted to get better. There was no way she would have lied about her condition to stay in such horrible circumstances.’
Initially, the doctors agreed. Her GP wrote that her symptoms were compatible with chronic fatigue syndrome. Another noted in Sophia’s files, which Criona obtained later, ‘I believe she is suffering from ME…I do not believe she is behaving in a hysterical, manipulative or psychologically bizarre fashion.’ Yet by January 2001 her GP was suggesting a visit from a mental-health social worker.
From the outset, Sophia researched her own illness and, in the one area where she was still able to exercise her stubborn independence, refused treatment she did not feel would benefit her. As a consequence, she was threatened with forcible sectioning under the Mental Health Act. Criona wrote to the GP in early 2003: ‘Sophia simply does not understand why she is under threat of sectioning because she does not want support from the mental health team. After all, the Department of Health does not regard ME as a mental illness.’
This is in accordance with the World Health Organisation (WHO) classification of ME as a neurological disorder. At the same time, Sophia’s GP even explored the possibility of Criona herself being sectioned. Ironically, Sophia was improving under her own regime. ‘Slowly, a quarter of an inch at a time, the curtains were pulled back, she could sit up every so often, have visitors every so often.’
In July 2003, the bell of the flat rang, hands hammered on the door. ‘Sophia had told me she wasn’t going to a mental hospital willingly and they would have to break in. I was scared beyond belief. The door smashed down, two policemen came in, the psychiatrist, the doctor, the social worker. They went to Sophia’s room and put on the light. She hadn’t had the light on in years.’ Within 13 days, the Mental Health Review Tribunal discharged her but, according to Criona, Sophia’s ordeal in a psychiatric ward devastated her fragile health. ‘She went into a hellhole, devoid of energy. She could never come back from that.’
‘I’m sure that ME is going to increase because it is being ignored. If you cannot get to the root of it, how can you cure it?’
Criona ventured into her room only to place food on a trolley and clean the commode as even another presence affected Sophia. ‘She was young, she wanted to see people, she needed to be touched. Yet you couldn’t touch her because it would make her more ill. Can you imagine a person not being able to have a hair wash for years? I’d be out on the streets crying, because if I cried in the flat she’d hear me.
‘She asked me not to let a doctor near her who didn’t agree with the WHO. I agreed with her. [Even so] once a week I made a point of asking her, “Would you like me to get the doctor?” and she would say no or shake her head if she couldn’t talk. I had to keep her safe from them. Imagine, keeping her safe from the doctors!’ Did you expect her to recover? ‘With ME, there was nothing to stop you hoping. But the last days, she couldn’t eat, couldn’t drink, couldn’t move. The reality is that if someone cannot eat or drink, they’re going to die…but you always hope.’
On the morning of 25 November 2005, while washing up, Criona had a sudden premonition that Sophia was going to die. She ended up outside the bedroom door, listening to Sophia’s laboured breathing. ‘Her breathing got slower and slower… and then she stopped and I couldn’t go in because if I did it would make her more ill. But somehow you go on hoping. So I stayed outside the door for a while, and then I went in and out of respect for Sophia I didn’t put on the light. I had a tiny torch and I went over and she was warm but she was dead.’
New Scientist magazine reported that the Brighton and Hove coroner’s June 2006 ruling was the first time ME had been given as an official cause of death in the UK, with the findings of the neuropathologist indicating a physical manifestation of the illness.
Following this, Criona complained to several professional bodies. The independent investigating officer, upholding some of Criona’s complaints, wrote that her letters and transcripts of conversations show Sophia to be ‘intelligent … …coherent…with no obvious sign of mental disorder… That her decision to turn down treatment was very uncomfortable for doctors does not invalidate her right to make that decision.’
Was Sophia’s sectioning in 2003 due to the medical establishment’s frustration? On the internet, Sophia’s case has attracted a flurry of heartfelt comment: ‘My diagnosis of ME was cited as rubbish by a GP… The next said ME was a mental disorder. As it is mainly women who suffer from it, it is labelled psycho-related.’ ‘Constant flu for 15 years is exhausting. [But] it is clear we were wise not to ask for help.’ Of Sophia’s GP, Criona says, ‘If she couldn’t cure it, it had to be mental.’ Of the medical establishment’s psychiatric approach to ME, she adds, ‘If people in high places say things, they expect others to believe them, and others believe them because they don’t check, and then it becomes the so-called truth. And ultimately, my experience is that when something goes wrong, people don’t ask, “How can we make it right?” They just close ranks.
‘But the effect on hundreds of thousands of people with ME is dreadful. I’m quite sure this disease is going to increase because it’s being ignored. There’s no research being done and if you cannot get to the root of it, how can you cure it?’
The sad conclusion is that there was no effective treatment available to Sophia Mirza. So her mother says, ‘I am glad I kept my word to her. I didn’t betray her trust. She was free and there was [my] loss. But we knew she wouldn’t be taken care of – and that’s an awful thing to know.’
Criona has set up a website in Sophia’s memory at sophiaandme.org.uk