I'm Sue, mum to Lauren 19. who has been ill for 8 years. Lauren isn't well enough to write herself so I hope you don't mind a second-hand account.

Lauren was disbelieved by the first paediatrician she was referred to at age 12. This woman told her to do as much as she could, to get up at her normal waking time for school and then to go to school as normal. The second consultation a year later saw us berated as a family for "giving in" to Lauren and the implication was that she was school phobic or being bullied.

We were told to increase the activities she was doing and she would soon get better. I guess this isn't classic GET but the effects were the same – a total and utter " crash" which means that Lauren is now mostly bed bound, housebound and has to be helped to bathe (and sometimes to eat). I enclose an extract from a letter of complaint we sent for illustration:

"During that meeting our whole family was distressed by the inferences that Dr. xxxxx chose to draw in order that she might explain Lauren's illness. We were told that Lauren, being an only child and attending a fee-paying school, meant that she "was under a lot of pressure to succeed" and that anxiety could be manifesting itself as these physical symptoms. She went on to say that if Lauren failed to "progress" with encouragement to do things and get on with life, then a spell on a ward for some psychological therapy would be suggested. We felt this was extremely intimidating and unhelpful.

Lauren was diagnosed two weeks later as having M.E., after our GP agreed to refer her to a paediatric specialist in Myalgic Encephalomyelitis. He recognised the very real and very physical symptoms for what they were and are. Over the seven years in which she has been ill, her health has deteriorated to the point where she has to use a wheelchair if she leaves the house. She receives Disability benefits and is very limited by her illness."

I know of other cases similar to Lauren but don't know whether their parents are up to writing.