They told dying daughter she was lying, says ME mother Criona Wilson

From The Times, 30 January 2010 (story by Steve Bird)

As Criona Wilson knelt beside her dying daughter’s bedside, she promised her that her death would not be in vain. Before the frail body of 32-year-old Sophia finally succumbed to the medical complications and ravages of ME, she replied in a whisper: “Then it’s all worth it.”

In the years that followed, Mrs Wilson, 66, a former midwife, dedicated her life to proving that her daughter’s condition was not a figment of imagination, nor one that merited her youngest child’s incarceration in a mental hospital.

Her battle saw her take on the medical profession and accepted thinking about the diagnosis and treatment of ME, also known as chronic fatigue syndrome. Eventually, in 2006, a coroner ruled that Sophia’s death was the result of myalgic encephalomyelitis — the first such ruling at an English inquest.

The fierce debate over ME has been highlighted once again by the case of Kay Gilderdale, who admitted assisting her daughter, Lynn, to kill herself after suffering from ME for 17 years. When she walked free from Lewes Crown Court on Monday, having been cleared of murder, Mrs Wilson was among those cheering her from the public gallery.

“I had to be there,” said Mrs Wilson yesterday. “It was such an important case. And the verdict was a vote for common sense in a trial that highlighted what people suffering ME and their carers have to face.”

Her daughter, Sophia Mirza, was a talented and popular arts graduate living with her mother in Brighton in 1999 when she contracted ME at the age of 25. She became confined to her bedroom and, just as Miss Gilderdale had, needed round-the-clock care.

In 2003 she was visited by a psychiatrist, even though Miss Mirza complained only of physical discomfort. The psychiatrist told her that she was making up her symptoms and if she continued to pretend to be ill he would section her under the Mental Health Act. Mrs Wilson said: “I knew my daughter. There was no way she was mentally ill or pretending.”

When the dread knock on her door finally came in 2003, there was little she could do. A policeman forced the door open and the psychiatrist and a social worker locked themselves into Miss Mirza’s room to prepare her for her trip to a psychiatric ward.

Her condition took a dramatic turn for the worse. After 13 days she was released and taken back to the care of her mother. “That spell in a mental hospital set her back terribly. We lost all faith in medical professionals. We were alone,” said Mrs Wilson.

In 2005 Miss Mirza could barely muster the energy to speak, eat or drink. She and her mother had already agreed that no doctors should be called in case she would be sectioned again. On November 25, 2005, Miss Mirza died in her bed at home.

Wiping tears from her eyes, Mrs Wilson said: “We did everything we could.” Determined to get to the bottom of why her daughter’s treatment had been so bad, she got hold of her medical records. After being contacted by the 25 Per Cent ME Group, which campaigns for those with the most acute form of ME, she agreed to her daughter’s body being examined.

At the inquest the next year a neuropathologist told the court that Miss Mirza’s spinal cord was inflamed and three quarters of her sensory cells had abnormalities. It was, the court heard, a clear physical manifestation of ME. The coroner ruled that she had died from “acute renal failures as a result of chronic fatigue syndrome”.

A year later, the National Institute of Clinical Excellence (NICE) issued its first guidelines on the diagnosis and treatment of the illness, describing it as “relatively common”, affecting up to 193,000 people in Britain. At the heart of that guidance is the need to take into account the opinions of the patients.Mrs Wilson is campaigning to get the Government to fund research into ME. “It’s not over yet.”