Journal of IiMER with true ethical principles, which they have learned in medical school, in order to help the patients using all their means. If we are intelligent and innovative, why do we not use our qualities just to try to help the patient? was the abuse that families of children with ME suffer as a result of doctors not protecting them properly. Over 30 years he had been involved with 40 families who had been subject to child protection proceedings reaching case conference level, sometimes court proceedings, to remove children. Fortunately, he has been successful in 38 cases but lost one in England and one in Norway. Each case was a tragedy. Dr. Nigel Speight Children with ME Dr. Nigel Speight thanked the Parliamentarians for the opportunity to speak at the European Parliament. A lot has already been said on the basic issue about ME being an organic disease and for him one of the beauties of working with children is they highlight this fact. Dr. Speight once told an adult neurologist that he had an interest in paediatric ME. The neurologist replied: “Oh, I didn’t realise that it occurred in children, maybe I should think again.” In other words the neurologist had the common view that all adults with ME were just depressive losers but if children can get ME, that would make him think again. Dr. Speight says his experience with working with children and seeing happy, healthy, cheerful, sociable children struck down with ME for him is the biggest proof one can have of ME being fundamentally an organic process. He actually accumulated over 600 cases of ME over the last 30 years mainly within the United Kingdom but has also been to Ireland, Norway and Germany. Dr. Nigel Speight briefly shared some of his clinical experience but what he really wanted to talk about www.investinme.org Dr. Speight showed some slides of a follow up study showing progress over time of 49 patients, of which 15 recovered over two to five years. Seven of them who were unlucky and were getting worse, and a large number who were going up and down. ME is a very unpredictable condition, with wide fluctuations in severity. Overall, there is grounds for cautious optimism and the prognoses is probably slightly better in children than in adults. Apart from what we can learn from the fact that children can get ME, he thinks the severe cases of ME teach us something else. These are the severe cases that have not responded to Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) so those treatments cannot be that effective. Dr. Speight has seen about seven of these, they are bed-ridden, have very severe unpleasant symptoms, have severe sleep problems and five of them are tube fed because they are to tiered to chew and swallow. Dr. Polo mentioned immunoglobulin, he gave this to all the severe cases and they did remarkably well. According to him immunoglobulin as well as Rituximab deserve re-examination for severe cases. Many paediatricians can see ME and when they see their first case, they panic. Dr. Speight talked about a girl who had been handed to him by the court. The girl had been subjected to three months of vigorous physiotherapy and had severely worsened. The court eventually asked to rehabilitate her before going home. She was lying in a darkened room, catheterised and in severe pain. If any doctors are in charge of a severe case, he advises them not to panic. A doctor always has a Page 55 of 82
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