Journal of IiME Volume 1 Issue 2 www.investinme.org ME Story The following is a true story told by the parent of a child with severe ME. It should be emphasized that this is a recent and ongoing experience of one family – happening in the UK in this year. The name of the child has been changed for this story. ROSE Our daughter Rose got the flu when she was nine, in 1998, and never really recovered from it. She saw different doctors and had scans and blood tests. One consultant said it was idiopathic pain syndrome which our GP said means "I don't know". At this time Rose was unable to climb the stairs – she went up and down stairs on her bottom. They also mentioned school phobia - had Rose been bullied or was she too clever for school? Rose tried to carry on at school for a while. The physio she was seeing advised her to walk to and from school. She would arrive home with her face white and fall asleep even at dinner. Over the next few years Rose got worse. In January 2001 Rose fell to the floor and was not able to walk again. My husband took her to the doctors as she was unable to eat or walk. The doctor said that the best place for her was in school. Then we were sent to see a psychiatrist who felt Rose should be seeing a consultant paediatrician because she had started to drink excessive amounts. He was kind but didn't know much about ME. A registrar told us that Rose had ME/CFS and they would speak to the consultant. We went to many meetings at the hospital. The local team kept giving Rose physio and hydro. Rose got worse. She was given lots of different therapies - even art therapy. We were told that if we went against the professionals we would have a Child Protection Order (CPO) served on us. By 2003 Rose was bed bound and on a NG Tube. She saw a new consultant who was nice and did listen to our concerns when we met him. Over the next 3 years whilst going back and forth to the hospital, for two lots of five week stays Rose was made worse – what with the travelling, noise and people in and out of Rose's room, with nurses that had never seen severe ME before and who could not understand that Rose could only remember what was happening on the current day. Her memory became so bad. She was repeatedly asked questions she could not answer. This upset Rose a lot. She was paralysed over her body, fed by NG Tube and was sensitive to light, noise and touch and in a lot of pain. By April 2006 Rose had a PEG fitted after a four and half month stay in hospital, following emergency admission, during which I stayed with her all of the time. As with Rose’s memory problems, she would not know me and from the experience of previous stays, the hospital staff would not give her medicine on time. We were told that if we went against the professionals we would have a Child Protection Order (CPO) served on us. She was in terrible pain all of the time and not receiving her medication made her worse. I was called an over-protective mother at times. By the time we left they wanted Rose to go to rehab, though my husband and I didn't want this for Rose. We felt we were not being listened to. After one meeting we agreed to visit three places in order to show we were willing to have a look, but we reduced this to one place as Rose's consultant was retiring. We visited this hospital but we felt it was not suitable for Rose. In the summer of 2006 Rose started having blackouts and no feeling in her arms and this progressed slowly up her arms and legs. At the moment she has no feeling above her knees and elbows. The consultant then referred us to another consultant who felt we could go and meet. But this never happened. After this things went along quickly. What was happening in the background seemed to be out of our control. (continued on page 43) Invest in ME Charity Nr 1114035 Page 42/72

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