For half a century, Pauline Ovenden has felt unable to talk to anyone in the medical profession about what is wrong with her, even though she was once a nurse.
In 1955, she was working at the Royal Free hospital in London when large numbers of staff were felled by a mysterious illness. Nobody understood what was happening, but in late July, with 70 nurses and other staff sick, the hospital was closed.
The gates were locked against the outside world and quarantine was enforced until October. What became known as the Royal Free disease is now believed to have been an early epidemic of ME.
Mrs Ovenden and many others believe that an unknown virus was brought into the hospital which acted as a trigger for the ME that she has suffered ever since. The early symptoms were malaise and headache, often with depression and tearfulness, according to Melvin Ramsay who investigated at the time.
A sore throat, nausea and anorexia were common, as were pains in the neck, back and limbs and dizziness. Vision was affected, some had paralysis of the face and vertigo was common. Two had to be fed through a tube. Most experienced muscle weakness.
In all, 292 cases were reported at the hospital, only 12 of which were patients. Mrs Ovenden, 69, believes that her own ME was brought on by exposure to three viruses within four years - virulent chicken pox when she was 20 in 1952, which forced her to take a year off work to recover, the Royal Free disease and glandular fever.
For decades, there was no explanation. There is still apparently no hope of a cure. "I have been struggling since 1952 and I'm no better off today than I was when I was first taken ill," she said. "For ME, I have been diagnosed, but I have had no care. If one is fair, they don't know what to do."
It was hard looking after her children. "They went every day on the school bus. When they came home at 4pm I tried to pretend I didn't feel as ill as I did.
"Lots of people with ME have trouble with their families. Lots of marriages break up. Some believe in it and some don't. My husband and daughters have been marvellous."
Some people with ME are bed-bound. Mrs Ovenden, now 69 and living in Leominster, Herefordshire, rations her strength. "I only dress on the days I go shopping. Getting dressed drains away the energy I need to do little things in the house.
"About seven years ago I went to bed in the afternoon, which I never used to do. I then went to get out of bed to cook a meal and my legs wouldn't hold me."
She wishes for more research and understanding. "One of my GPs said it is a living hell. I said thank you - that is the first time anybody has understood."
