Journal of IiME Volume 1 Issue 2 www.investinme.org Children and Young people with ME– A Personal Overview of the Last 20 Years By Dr. Nigel Speight Introduction Having just retired after 25 years as a Consultant Paediatrician with a special interest in ME, I have been asked to give this personal take on the last 20 years regarding young people with ME and the way the medical profession has treated them. Overall the profession has not (in my opinion) exactly covered itself in glory in many instances. It is possible I received an over-pessimistic picture in that the cases coming to me from other areas tended to be self-selected hard-luck stories. Nevertheless there were some definite cases which in my view amounted to “Child Abuse by professionals”, and of course these were mainly due to ignorance about or disbelief in the reality of ME on the part of otherwise wellmeaning professionals. Fortunately there is currently a brighter picture and better understanding and acceptance of ME in the profession. However, I was still called in on two cases of Care Proceedings in young people with ME in the South of England in the last 6 months of my career. My personal story regarding ME I was never taught anything about ME during my student training or subsequent training in paediatrics, and became a consultant in a state of almost total ignorance on the subject, like most of my peers. I had a slight advantage in that two of my nephews developed the condition, and as they had both been keen sportsmen and were desperately unhappy at being unable to continue sport I had an instinctive reaction of belief in ME as a genuine organic/physical illness, and a natural scepticism for the widespread view that it was “all in the mind”. About 23 years ago I saw my first case, a 13 year old young lady who announced her diagnosis to me. Her symptoms “rang true” to such an extent that this experience cemented my belief system along the lines of an organic causation. The late Alan Franklin had an almost identical introduction to the condition at about the same time Subsequently I took an increased interest in the condition and cases just seemed to gravitate to me, both locally, regionally and from all over the UK. By the time of my retirement I had seen personally c 200 cases in North Durham, 150 in the Northern Region and another 150 from further afield, including Northern Ireland, the Isle of Man and Scotland. Many of the cases who came from further afield did so because of failure to obtain an official diagnosis of ME which had led the family to feel threatened in a number of different ways, the worst being threats of Care Proceedings, fines for non-school attendance, and threatened withdrawal of benefits (or failure to be granted benefits in the first place). The controversy as to the nature of ME Seeing young people develop ME out of the blue in the absence of any psychological trigger made me question the widely held belief that ME is a “psychosomatic” disease. Invest in ME Charity Nr 1114035 Dr. Nigel Speight Dr. Nigel Speight was, before his retirement, consultant paediatrician at The University Hospital of North Durham, County Durham, Dr Speight is one of the most renowned authorities on ME and children in the UK. I felt as if I was the little boy who remarked that the Emperor’s new clothes were non-existent. Accordingly I sent a questionnaire to all consultant Paediatricians in the Northern Region, sometime in the mid 1980s. I was heartened by the response, in that a clear majority (19 versus 7, with about 10 don’t knows) shared my belief that ME was primarily a physical illness which can affect people who are at least initially psychologically normal. Most of these doctors were general paediatricians. When I repeated the exercise with Child Psychiatrists, they almost universally refused to tick any of the boxes on offer but instead deplored the question and gave me lectures on the mind-body continuum! Basically, this was a reflection on how Psychiatry has been allowed to dominate the field of ME for the 30years since 1970, when McEvedy and Beard first alleged that Royal Free Disease had all probably been a manifestation of mass hysteria in nurses. (They did not actually see any of the cases but just constructed their hypothesis form a review of the notes) The discipline of Adult Medicine seemed only too happy to abdicate the field to psychiatry, possibly because with increasing specialisation there wasn’t an “ology” that would own ME. (eg Neurology, (continued on Page 39) Page 38/72

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