A policeman's wife has been arrested on suspicion of killing their 31-year-old daughter, who had suffered from a serious illness for more than half her life.

Kay Gilderdale, 54, was released on bail pending further inquiries after the death of her daughter Lynn, who had been bedridden for 16 years while suffering from myalgic encephalopathy, also known as ME or chronic fatigue syndrome.

Mrs Gilderdale has previously discussed whether it was right for her daughter to continue to live in pain. Speaking in 2006, she said: “If I didn't believe, and she didn't believe, that one day she would get better then I don't think it would be right for her to go on suffering like this for a whole lifespan of 70 or 80 years.”

She added that she felt her daughter was in limbo between life and death. “If someone dies, you mourn them, then you get to a stage where you know that person is gone and you move on. But Lynn is neither one nor the other. She is stuck in that room, not dead, but not alive properly.”

Ms Gilderdale, who died last Wednesday, gained national attention two years ago when she took part in a campaign to foster better understanding of her disease, which caused her constant pain and robbed her of the ability to speak.

The disease has been recognised by the World Health Organisation but is still regarded with suspicion by some doctors, who regard it as a form of depression rather than an illness in its own right.

Police were called to Mrs Gilderdale's home in Stonegate, near Heathfield, East Sussex, at 8.30am on Thursday. Sussex Police confirmed that a 54-year-old woman had been arrested on suspicion of murder and bailed to return on March 6.

The Gilderdale family appeared to rally around Mrs Gilderdale yesterday by releasing a statement that described her as a “totally dedicated mother”. Her estranged husband Richard and their son Steve are understood to have contributed to the statement.

The tribute said that Ms Gilderdale's death would “leave a massive void in their lives”. It praised her courage in the face of a life-destroying illness. “The love she gave so unreservedly will be missed every minute of the day,” the family said.

“At the age of 14 years she was struck down by ME, an illness greatly misunderstood, and, as a result, suffered the stigma attached to this dreadful illness. She fought long and hard for 17 years with immense bravery, enduring constant pain and sickness. Every system of her body was affected. She required 24-hour care that was provided by her totally dedicated mother, with continuous support from Lynn's father.”

Relatives said that Ms Gilderdale had spent months at a time in hospital fighting life-threatening conditions.

“Prior to her illness, which left her paralysed, unable to speak, eat or drink and, until recently, no memory, she was an active healthy teenager full of life's dreams. She enjoyed sailing, swimming, cycling and was an accomplished musician.”

Her family would continue to campaign for a better understanding of ME, the statement said.

“Her dedicated mother, supported by Lynn's family, has pledged to achieve her ultimate goal, for better understanding and recognition of this life-destroying illness.”

Detective Chief Inspector Andy Griffiths, of the Sussex Police major crime branch, is leading the investigation into her death. Chief Inspector Heather Keating, commander of Rother district, said: “This is a very tragic incident, but we are not looking for anyone else in connection with it.”

Some 250,000 people are estimated to be affected by ME in Britain, according to the ME Association. Common symptoms include severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances and poor memory and concentration.

Commentary: Charles Shepherd

Medical attitudes towards ME are changing but a significant minority of doctors do not regard it as a real disease. It first came to medical prominence in 1955 after an outbreak at the Royal Free Hospital. At that point it was a new disease to many doctors but it did not grab the headlines. In the 1960s we were generally told that it was a nonsense disease, or worse, that it was mass hysteria.

What has kept that prejudice going is that it has the name myalgic encephalomyelitis, which is not accurate. Encephalomyelitis implies inflammation of the brain and spinal cord, which is incorrect. It was only in the mid-1980s that the medical profession renamed it chronic fatigue syndrome, but many doctors do not like that name because it has become a dustbin diagnosis for any disease involving symptoms of fatigue.

There is no simple pathological explanation to the illness. The medical profession cannot agree on the name. There are differences of opinion on how to define it. And there is no diagnostic test for it. As a consequence it is a very difficult illness for doctors to deal with.

It is now recognised by the World Health Organisation and the Medical Research Council, but finding a doctor who takes it seriously can be difficult. About 20 per cent of doctors are not interested or are sceptical, and some are hostile.

Dr Charles Shepherd is medical adviser to the ME Association and has had regular contact with the Gilderdale family

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