LYNN GILDERDALE, who died on Wednesday last week, and her family, struggled not only with the terrible effects of Myalgic Encephalomyelitis (ME), but also the stigma attached to its sufferers.
The root cause of the disease is disputed within the medical profession, with one school of thought suggesting the symptoms are entirely brought on mentally by the patient themselves.
Jane Colby, executive director of The Young ME Sufferers Trust, has written a number of books raising awareness of the severity of ME, and spoke in detail with Kay Gilderdale about the problems Lynn had encountered after she was taken into hospital.
In Ms Colby's 1996 book – ME the New Plague – Lynn's treatment was described anonymously.
"Some of her stories were just wicked, just wicked. There is no other way to describe the way in which she was treated," said Ms Colby.
Suffering fits at specific times of the day, doctors would deliberately try to disorientate Lynn to suggest she was making it up. They would leave food across the room from her, and would leave her lying on the floor if she fell out of bed to try to force her to move.
Ms Colby, who fell ill with ME herself in 1985, and is still hindered by its effects, is working with doctors in Britain and the United States to try and prove the effects are caused by a virus she believes is similar to Polio.
"You would not know how bad it was until you have seen somebody in that situation and had cared for somebody with it," she said.
"You feel as if you have been poisoned, you are in pain constantly, you stink because of the sweat coming off you.
"It is dreadful. We are all devastated and our thoughts are with the family at this time."
Kay and Lynn Gilderdale worked not only with Ms Colby in trying to raise awareness of ME but were also members of the Kent and Sussex ME Society.
Colin Barton, chair of the society, worked on several occasions fundraising with Lynn's father Richard, a former sergeant with Sussex Police.
"In Lynn we have a very brave young lady. She worked tirelessly for years making the public aware of how severe the illness can be," he said.
He explained how around 10 per cent of people diagnosed with ME were so badly affected they were left bed-bound.
"The family have always done all they possibly can to help the cause of ME. The mother was a very caring woman who did all she could for Lynn," said Mr Barton.