Journal of IiME Volume 1 Issue 2 www.investinme.org Children and Young people with ME – A Personal Overview of the Last 20 Years (continued) Immunology, Rheumatology, Microbiology etc, although in each of these specialties there were individuals who took an interest) I continued to attempt to fly the organic flag. For instance I demanded the right of reply at the annual paediatric conference in Cambridge after a prominent Child Psychiatrist had been invited the year before. Addressing an audience of c 80 paediatricians I won a majority vote on a show of hands at the end of my lecture. Agreeing to see cases from outside my own area was a further very effective way of highlighting the continuing controversy. My general approach to young people with ME The first person to influence me was Dr Betty Dowsett who was invited by one of our local GPs who believed in MEto give a lecture in our hospital. She gave such a clear exposition of the clinical features that she made the condition both “real” and respectable for me, and I felt empowered to make the diagnosis myself in future. Subsequently I heard both Dr Alan Franklin and Dr David Bell talk on the same occasion in Newcastle and this increased my confidence in understanding the condition. I remember that Dr Franklin said we are training younger doctors to be too dependent on performing tests on patients and losing the clinical skill of history taking as a result. I rapidly realised that ME sufferers want above all for their condition to be accepted by their doctor and their symptoms validated. They are enormously grateful for this and very forgiving of our failure to cure them. They then wish their doctor to remain engaged with them and their condition, and not to be discouraged by the failure of the patient to recover. Too often doctors reject patients with ME on the grounds that there is “nothing they can do for them”. Even this is preferable to the “one way ticket to the psychiatrist approach” which is again understandably perceived as a form of rejection by the patient. This need for validation was brought home to me by my seeing a young teenage girl in a wheelchair sobbing her eyes out at a meeting for young people. I asked her mother what was the matter and who had upset her, only for her to reply “Its all right, those are tears of joy – she has just heard a lecture by Dr David Bell after which she said “thank goodness there is one doctor in the universe who understands what I have been suffering from these last three years” “! Another telling anecdote is that of a highly intelligent 6yr old girl with ME whose paediatrician allegedly told her “There can’t be anything wrong with you because all your tests are normal” (How many times have the ME community heard something to this effect?) The girl replied with perfect logic and even better grammar “Maybe I’ve got a condition for which you have not yet invented the right test”! Invest in ME Charity Nr 1114035 The challenge of the Very Severe Case My first very severe case took me by surprise and I made big mistakes in her management. I had already diagnosed her while she was still in the moderate range of severity only for her to deteriorate suddenly following a further viral infection. In retrospect I realise that I was more concerned for my own position than her welfare, in case I had missed some other more treatable diagnosis. (This is an almost universal fear in doctors confronted with ME) I accordingly referred her to tertiary specialists for second and third opinions, and she was subjected to numerous upsetting tests and examinations over a three day period in hospital. This so traumatised her that she had difficulty forgiving both me and her parents over the next three years, and this may well have delayed her recovery. Subsequently every fresh professional whom I introduced to her care managed to upset her further, giving me grounds for being very sceptical of the orthodox teaching of the virtues of a multidisciplinary approach! Too often doctors reject patients with ME on the grounds that there is “nothing they can do for them”. Even this is preferable to the “one way ticket to the psychiatrist approach” Things were further set back when the GP insisted on calling a meeting where the Health Visitor wondered out loud if perhaps the father was sexually abusing his daughter; minutes were sent to the family in a spirit of openness! (Not surprisingly the family changed their GP practice after this episode) Fortunately she eventually made a good recovery despite having been bedridden and tube-fed for 3 years. My next case was almost exactly similar but I handled her according to my new convictions. I strictly limited her from too much contact with other professionals, simply sharing her care with her GP, our home nursing service and our dietician (to supervise her tube-feeding) This second case did much better emotionally, and made a total recovery within 2 years. I did not involve Child Psychiatry, Physiotherapy, Occupational Therapy or any other disciplines and she did not appear to suffer from their absence, making a total recovery in 2 years after 9 months of tube-feeding. In my experience of cases in the rest of the country, this scenario of the paediatrician being panicked by meeting a very severe case is really quite common and has contributed to some of the cases referred to Social Services. (continued on Page 40) Page 39/72

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