WHAT does severe ME mean? I get so mad when I read something which suggests it's just tiredness and muscle pain. What about the other symptoms?

There must be lots of people who know exactly what it means and feel frustrated the true severity of the illness is not portrayed adequately. People like my daughter Lynn, who cannot get out of bed, even to the bathroom, let alone out of the house. People who cannot speak or read or write to give an interview to tell the world what it's really like; who are not represented in the research studies because they are too ill to take part. People who cannot remember what their father or mother, brother or sister look like. People who are in constant pain, whose whole life has been taken away from them and nobody seems to care; who lie in limbo day after day struggling to survive, yet never stop fighting.

Lynn has been ill for ten years. Nobody could accuse her of not having a positive attitude. All they have to do is come and see what life throws at her each day and how she deals with it.

Her illness started suddenly after a BCG vaccination. She deteriorated at frightening speed from a healthy 14-year- old to a devastatingly ill young girl. By the time she'd been ill for six months she was totally bedridden and unable to care for herself. She was tube fed, unable to speak, read or write and her memory had gone, her legs were paralysed and she couldn't sit up. She had the usual long list of symptoms, sore throat, swollen glands and lymph nodes, nausea, dizziness, muscle spasms, headaches, noise and light sensitivity, poor temperature control and severe pain throughout her body.

During the course of her illness, she and us have had the usual round of insults, accusations and threats.

Where was the compassion and understanding to try and help a devastated family deal with such an horrendous illness?

After the early years of emotional and physical pain and fear, we now have a kind and caring GP and consultant. We all get on with the task of trying to alleviate as many of Lynn's symptoms as possible and helping her as best we can.

I am not trying to concentrate on the negative because in our daily lives we do the exact opposite, our motto is "laugh rather than cry", but I desperately want people to see and understand how strong ME sufferers are and what they have to deal with.

Ten years on and Lynn is still extremely ill. All the doctors and nurses who have got to know her say how brave she is and are very kind to her. It was not always like this. When she was first ill she was forced to do all the wrong things and has paid a terrible price.

How different might it have been if she'd had the right help and advice from the start? How different would it have been if we'd had the proof that ME is a physical illness?

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