Presentation on theme: "Dr Nigel Speight was not speaking from a prepared script – but he has kindly provided the following summary of his presentation. Dr Speight is also Paediatric."— Presentation transcript:
Dr Nigel Speight was not speaking from a prepared script – but he has kindly provided the following summary of his presentation. Dr Speight is also Paediatric Medical Adviser to The ME Association.
I started by mentioning my experience of paediatric ME/CFS over the last 20 years. Since the death of the late Alan Franklin from Chelmsford, I am probably currently the paediatrician with the most experience of this condition in the U.K. I have an accumulated total of over 200 personal cases in the North East and have seen around 150 further cases nationwide, including Scotland, the Isle of Man and Northern Ireland. These latter cases were ones where I was called in for a second opinion by the local paediatrician because of the severity of the case or, more commonly, where I was asked for a second opinion by the family and GP because of difficulties in getting a diagnosis locally.
What can paediatric ME/CFS teach us about the basic controversy as to whether ME is a physical or psychological condition? I started by saying that children sometimes have a knack of going to the heart of the matter as per the Bible “Out of the mouths of babes and sucklings...”
STORY 1: A 6 year old girl was told by her Professor of Paediatrics that there was nothing wrong with her because all her tests were normal. She responded quite logically by saying “perhaps I have got a condition for which you have not yet invented a test!”
STORY 2: A 14 year old doctor’s son in Australia developed ME and over the next year was taken all over Australia for second opinions. Someone said to him at the end of this year that he must have found out a lot from having seen so many clever doctors. He responded “not much really, they don’t seem to understand it, but there is one thing I have noticed – it is a condition which seems to provoke an acute emotional disturbance in doctors confronted with it!”
Similarly, the experience of severe cases in young people supports the same thesis. If ME/CFS was a basically psychological disease then in the case of a severely affected bed bound young person there would have to be such concrete evidence of severe psycho-pathology to cause such disability that it would be blindingly obvious. However, such evidence is almost invariably lacking.
Regarding the basic controversy of ME being a physical illness or psychologically caused, I think the evidence in paediatrics can supplement all the evidence from adult ME and strengthen it because the issues in paediatric practice are clearer and more black and white. When one sees an 8 year old child who is functioning happily at school and at home who is then struck down by the condition in the total absence of any other psychological problems, it would seem self evident that this is primarily a physical condition.
Map of Britain - yellow dots The yellow dots on the following map represent cases that had to either travel to Durham or had to be visited by me for the purposes of getting a diagnosis of ME in the absence of one locally, and/or providing extra support and advice for the local professionals.
Map of Britain – red dots The red dots all represent cases in which Child Protection Proceedings were commenced and families were threatened with removal of their affected child, usually as a result of the local paediatrician either not believing in ME in the first place or failing to diagnose it in a particular child and initiating proceedings on the basis of Munchausen Syndrome by Proxy. (Since this slide was made the number of yellow and red dots has increased by about 30% each).
Sarah’s case - next two slides Sarah’s case demonstrates how even very severe cases can make a total recovery and raise the question as to whether or not immunoglobulin therapy might yet be proved to be effective in this condition. I mentioned that had research in this area not been dominated by the psychological view for the last 30 years, then the question about immunoglobulin would have been settled long ago.
Slide of girl doing aerobics (consent given for use of this slide). This girl from Northern Ireland was participating in an aerobathon while unfortunately incubating a dose of flu. Three days after this photo was taken she bed ridden with severe ME and spent the next two years tube fed as an in- patient in her local paediatric ward. On her 16th birthday she was discharged from paediatrics and although she remained an extremely severe case no adult physician has ever agreed to accept responsibility for her care.
Slide of girl doing aerobics Her current situation is that at the age of 23 she is still bed ridden, tube fed, catheterised, and nursed on a ripple bed. She receives total nursing care from her mother and the only doctor responsible for her case is her broad- shouldered general practitioner. She still has total body pain and only sleeps 4 hours out of 24. This case demonstrates the reality faced by severe cases of ME and the tendency for the medical profession to abdicate responsibility for them.
Slides of three graphs These are slides showing the progress of the severity of paediatric ME/CFS over a 6-8 year period in a consecutive series of 49 cases from North Durham. The first slide shows the relatively optimistic picture in that about a third of cases make a virtually total recovery, usually over 2-3 years.
Slides of three graphs The next slide shows that a minority of cases (7 out of 49) were severe at the time of follow up. The third slide shows the larger number of in between cases who over all were improving but were not yet cured. These slides show how unpredictable a condition this is and how wide can be the fluctuations both of relapses and improvements.
Remaining slides The remaining slides contain extracts from the CMO’s report especially with respect to paediatric ME/CFS. I did not have time to cover all these slides in my presentation to the enquiry.