Journal of IiME Volume 1 Issue 2 ME Story – ROSE (continued) . The consultant said that the some of the symptoms Rose had were not due to ME (i.e. memory loss and The new consultant came to visit Rose and after this there was another meeting which was organised with Rose’s team. The consultant said that some of the symptoms Rose had were not due to ME (i.e. memory loss and paralysis) and that her ME could be a cloak for PRS (Pervasive Refusal Syndrome). We went home to find out what PRS was and all the people in the meeting did the same. We felt very angry about this diagnosis of PRS. Yet people couldn't understand why we felt this way and didn’t understand why it mattered. It matters to us after reading about it. After all, the psychiatrists Rose has seen over the years had never mentioned this to us. So Rose had to do a 6 week diagnostic test for PRS with two 6-second sessions of physio, adding on 10% each week and starting with 10 minutes high activities. This included education, art therapy and visitors. Even if Rose was unconscious from blacking out then someone had to read to her and the curtains had to remain open - 10% each week. Then there were low activities which would be performed all day. This consisted of someone reading to Rose, listening to the radio, chatting with someone or listening to the TV in the background. If she was watching TV then it had to be turned off after a certain time and then listening to music on Cd player. After the six weeks we were told that Rose did not paralysis) and that her ME could be a cloak for PRS (Pervasive Refusal Syndrome). have PRS as she never got worse during the six weeks. We felt those 6 weeks were a nightmare. We prayed every day for Rose not to get worse during this time. The timetable continued after the 6 weeks and when I asked what would happen if Rose got stuck on 25 minutes the reply was that she must be scared of going to school. Rose has not been to school since she was 11 years old (seven years ago)! We got to 20mins on the timetable and the pain and light sensitivity got worse. She kept getting infections. We eventually stopped the timetable. If we had kept going Rose would have been made far worse. We are now doing our own plan for Rose - most of it taken care for by Rose. Now we are left trying to find an adult consultant for Rose - one who understands severe ME. I wanted to tell Rose's story as the phrase PRS still makes feel sick. One member of Rose’s team mentioned a couple weeks ago that they had forgotten who this was all about!! www.investinme.org More ME stories, including all of these contained in this Journal, are available at – http://www.investinme.org/mestorygallery1.htm Stories from parents of people with ME may be found at - http://www.investinme.org/mestorygallery2.htm ME in Parliament Countess of Mar: "If a group of people refuses graded exercise and cognitive behaviour therapy, on the basis either that they are afraid or that they know it will not help them, will they be penalised?" Lord McKenzie of Luton (Parliamentary Under-Secretary, Department for Work and Pensions; Labour Peer): "there is no requirement for individuals to carry out any specific type of activity or treatment. That cannot be sanctioned". - Hansard Hansard (Lords) on 28th February 2007, column GC198 Invest in ME Charity Nr 1114035 Page 43/72

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