From the Derby Telegraph, 27 February 2012
“SIX words and she would be exhausted.” That was how Roger Owen explained his daughter's reluctance to be visited by doctors.
“She just couldn't cope with any more information than that,” he said. “Even her lunch took four hours to eat because chewing used up energy.”
University graduate Lois Owen, 34, died after her weight plummeted to just 3st 2lbs (20kg), leaving her exhausted and barely able to move.
She had battled for years with chronic fatigue syndrome and medics said she also had anorexia.
Neither Mr Owen or his wife could face sitting through the inquest held into her death. Mr Owen attended only to give evidence.
He told the hearing that those involved in Lois's care were “powerless” as everything they tried – from home visits to admitting her to hospital – made her condition worse.
Even Lois's GP said the best course of action was to allow her to remain bed-bound, at home with a team of carers.
Chronic fatigue syndrome is a disorder that affects one in 250,000 people in the UK and results in extreme tiredness. The cause is not known and there is no cure, although most people improve or recover over time.
But when Lois got a chest infection in March 2009, she was too weak to fight it off and she died.
At her inquest, held at Derby Coroner's Court, deputy coroner Louise Pinder ruled nothing could have been done differently to save Lois's life.
A post mortem examination showed she weighed 3st 2lbs when she died and her organs had shrunk due to “poor” nourishment.
Mr Owen said Lois's loss of appetite was caused by a lack of energy, but medics said she had anorexia.
And consultant pathologist Dr David Semeraro said cachexia, meaning a weakened body, had left Lois unable to fight a chest infection that led to her lungs failing.
Medics told the inquest they felt “powerless” as Lois, of Crosby Street, Derby, refused to be seen on a regular basis and wanted to be alone when she ate or drank.
GP Dr Ruth Lenehan said admitting her to hospital was “not in her best interests” as her physical condition “deteriorated” when she was taken from her bed.
Lois's health problems began when she was diagnosed with epilepsy at the age of 12 or 13, although medication meant it rarely impacted on her life. A year later, she was diagnosed with chronic fatigue syndrome.
Mr Owen told the inquest the condition was identified after his daughter came home from school feeling tired.
He said: “She was complaining of leg aches after walking two miles uphill to school. We didn't take too much notice at first but then it
was getting worse.
“She was going to bed before 10pm. It meant her social life was quite limited.”
Mr Owen said her daughter's condition “fluctuated” and she had been well enough to enrol at the University of Derby. Fatigue crept back into her life but she managed to complete her course.
She chose to remain in Derby after graduating in 2001 and set up a charity called Therapeutic Arts, which aimed to help people by providing free classes in painting, drama, poetry, sculpture and music.
But, a year after setting up the business, she suffered a relapse of her chronic fatigue syndrome and was largely bed-bound until 2004.
Dr Lenehan told the inquest Lois was sectioned under the Mental Health Act in July of that same year after “throwing” herself out of a window, leaving her badly injured with fractures.
Mr Owen said his daughter told him she had begun “hearing voices” and that she later blamed it on dehydration.
With anti-psychotic medication, consultant psychiatrist Dr Subodh Dave told the hearing that she “progressed well”, put on weight and wasdischarged from hospital as an outpatient in October 2005, allowing her to return to work. She was discharged from Derbyshire Mental Health Trust completely in March 2006.
But another chronic fatigue relapse towards the end of 2006 led to her again being bed-bound. She never recovered.
Mr Owen said he and his wife, who live in Bradford, did not believe their daughter was ever clinically anorexic.
He said: “We took her out in 2005 for a meal, near Christmas, and she surprised us by deciding to have a steak. She enjoyed her food.
“We feel she never had a problem with food except for when she was unwell. When she didn't want to eat she said it was because she didn't have the energy.”
Mr Owen said Lois believed she would get better.
He said: “She could not communicate orally for the last two-and-a-half years of her life. But she left bits of writing and in them she wrote her plans for her business and a list of five books she wanted to write.
“By her bedside there was a five-year plan, starting in 2009, of things she hoped to achieve. They were to do with her home, her business and her writing.”
Dr Lenehan said she never saw Lois out of bed because she was too “frail and thin”.
She said Lois did not allow her to visit frequently.
Asked about the last time she saw Lois – four days before her death – she said: “She appeared thinner than when I had seen her previously. I was able to communicate with her via hand gestures and writing. We discussed admitting her to hospital but she felt that would make her condition worse.”
Dr Lenehan said she and Lois's team of carers had done all they could to help her.
Christopher Ward, professor of rehabilitation medicine at the University of Nottingham, agreed with Dr Lenehan, adding “there was a
sense of powerlessness” among her carers.
A team from Derbyshire Care Services visited three times a day to prepare food and clean. Care co-ordinator Charlotte Wilson said a care plan – agreed by Ms Owen and her family – was followed.
Deputy coroner Louise Pinder recorded a narrative verdict.
She said Lois had received “appropriate care” in the circumstances and ruled she had not been neglected, accepting Ms Owen “remained in control of, and was responsible for, all decisions relating to her care”.
Lois wrote book about condition to help others
Lois Owen's love of writing and helping others is what led her to pen a book on tackling chronic fatigue syndrome.
Now her father, Roger Owen, has had it published in his daughter's memory – and says that a chronic fatigue charity has expressed an interest in selling the book.
Lois wrote chapters in her stronger years, Mr Owen said.
The book, Bed Without Boundaries, details her own battle with the syndrome and suggests therapeutic activities to help other sufferers.
Mr Owen said: “She finished it in 2003 and it's based on her experiences of chronic fatigue syndrome up to that point, such as being bed-bound as a teenager and her relapses.
“After she was better for a while, in 2004, she managed to update it. It was her dream to have a book published. When she died, I edited and illustrated it.”
Mr Owen said Lois had started writing four other books but never finished them due to poor health.
He said she was a talented writer and that he and his wife had kept 100 of her poems. “It's one way of remembering Lois,” he said.
The former University of Derby student was among only a few people on her combined psychology, healing arts and drama course that graduated with a first-class degree in 2001.
From then, she and a friend set up a charity. It offered free sessions in painting, drama, poetry, sculpture and music.
How tragic! I hope all those who think ME is a ‘made-up illness’ read this.