Lowestoft woman's ME nightmare
PUBLISHED: 06:30 29 April 2011 | UPDATED: 17:15 29 April 2011
THE mother of a Lowestoft woman who has spent 14 years bed-bound in a darkened room spoke out this week to highlight the devastating impact of the illness ME.
Kerry Newnham, 34, was a bright student, very active in sport, playing the flute and piano, and with ambitions to teach, travel and do charity work.
But her life changed after she began suffering pains in her legs when she was 15.
Just before she turned 16, following exams and a two-week hill walking holiday, Kerry spent two weeks in bed after a viral-type illness, and has never felt totally well again.
Throughout sixth form, she became increasingly unwell but, despite her constant tiredness, she still managed to secure a place at university in Leeds to study English and music.
She struggled through her first year, but in the end had to give it up.
Kerry is now bed-bound and remains in a room with the curtain drawn at her home in Shaftesbury Court, Lowestoft, because she is sensitive to the light and too much stimulus.
After taking 18 months to get a proper diagnosis, she was found to be suffering from a form of the debilitating illness myalgic encephalomyelitis – better known as ME.
Kerry’s mother Angela, said: “It has had a devastating impact on her life and she hasn’t really got any quality of life. She’s not able to watch TV or read a book or do anything. She can’t have anyone sit with her or talk to her because she can’t cope with that sort of stimulation.
“We washed her hair about six months ago because she hadn’t had it done for a year, but it made her even more ill. She hasn’t had a bath now for a year-and-a-half.”
Kerry is too ill to be interviewed in person or by telephone, but she said in an email [in her own words]: “No talk of management or warned that serious in the early years. That was my downfall. Took 18 months to get diagnosis and then reassured would just go away. Always told to get on with it & must push myself despite almost constant malaise/tiredness.
“Had doctor, four years in, almost persuade me it was psychological and had to stop looking for physical cause. Advised to work through fatigue even though had had to leave uni after one very difficult year & was housebound & hugely struggling cognitively.
“Too ill to visit specialists and no GP support/advice so exhausted myself trying unproven alternative therapies, even travelling to them. Resulted in profound disability, especially & distressingly cognitively.
“No one including myself, could believe what had happened to me, gradually deteriorated to this: kept alive with tube feeding. Can only speak the odd word/sentence now and then so communication is through signing/typing or a speech aid. Curtains always drawn. Can’t cope with visitors or adequate personal care. Had hair washed recently for first time in a year – made worse & now have to be helped onto a bedpan. My most distressing symptom is cognitive dysfunction and confusion, loss of sense of self and profound problems thinking/seeing/imagining etc. My brain feels smashed & I’m stimulation intolerant.”
Kerry’s plight was highlighted this week as plans to conduct pioneering research into ME moved a step closer.
The national charity Invest in ME is working towards funding research into the illness.
At the same time NHS Norfolk, alongside NHS Suffolk and NHS Great Yarmouth and Waveney, wants to harness some of the expertise the charity will bring to Norfolk to offer a better service for patients, many of whom have been bed-bound for years.
Invest in ME first declared its intetion to conduct research in Norwich almost a year ago. It is now almost ready to start, but it must first find a local hospital willing to allow a London consultant to work under its auspices.
The consultant, who would initially come to Norfolk a couple of days every month, would also be used as a consultant to care for people with severe ME. However, he needs to work through one of our local hospitals, and the Norfolk and Norwich University Hospital has refused to support the project.
Richard Simpson, a trustee of the charity, who is from Norwich and who has two daughters with ME, said researchers from the University of East Anglia were willing to conduct the research and had also enlisted the support of a top London consultant to examine patients and correctly diagnose them.
Mr Simpson, who is being supported by former Norwich North MP Ian Gibson, said: “This is a serious illness which is blighting the lives of hundreds of thousands of people, but there is very little research into it, and practically none to look into the biomedical causes of ME, which is what we want to fund.”
The big stumbling block, however, is ME is a contentious illness, as little is known about its causes, and the medical profession is divided as to whether it is a psychiatric condition or a physical disease.