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) It was significant that the Psychiatrists on the Working Party refused to sign up to it on the grounds that it placed too much emphasis on ME being an organic condition! The Gibson report is also likely to prove very helpful in its call for more biomedical research. The College of Paediatrics Guidelines were useful in making ME more of an official condition and helping paediatricians to accept responsibilities. Like many I have my doubts on the NICE Guidelines and feel they are inferior to the CMO’s report. Similarly I sense some scepticism over the new Treatment centres on the part of many ME sufferers. Time will tell. The Role of Chronic Infections Ironically, in the last 12 months before I retired I became very interested in the Lyme Disease/Tic born chronic infection story and am sorry to be unable to pursue it to a conclusion. I attended a fascinating conference in Leicester organised by Lyme Disease Action and heard a brilliant lecture by a doctor from its reality, and their New England called Dr J Burrascano. Over the last year I have come to regard two of my severe cases as likely cases of Lyme disease and was treating them with prolonged courses of antibiotics with some possible improvement. I would recommend the LDA website for anyone interested: http://www.lymediseaseaction.org.uk/. The exciting thing about this area is the possibility of treatment, and of course the model of chronic infection pointing to an organic causation. One last question. Someone who cycled from Land’s End to John of Groats for AfME was accommodated by ME families the length of Britain on his ride. At the presentation ceremony he asked the following interesting question “Does ME only attack nice people and their families, or can it attack anyone and then turn them into nice people?” Fascinating question which I have often asked myself! Any suggestions/comments? ME Story ME Story The following week the psychiatrist asked to see me at the hospital, in a manner that I interpreted that would not benefit Sophia if I refused. I had no option but to comply. I was told that if Sophia refused to go to the M.E. clinic, or if she did not recover within the following 6 months, that she would be sectioned under the Mental Health Act, then added that if I tried to stop this, then the psychiatrist would go to the courts to have me removed as the nearest relative. Furthermore, if I did not open the door when they would come to take Sophia away, that the police would be called to “smash the door down”. When I asked how much better Sophia would get by these proposed actions, the reply was given that it was “none of your business, that it was for the courts to decide”. The psychiatrist wanted to arrange for me to see a psychologist so that I could understand the good that the psychiatrist was doing to Sophia. I refused. (from The Story of Sophia and M.E. – http://www.investinme.org/Article050%20Sophia%20Mirza%2001.htm ) (It is now almost 2 years since Sophia Mirza died from ME) Invest in ME Charity Nr 1114035 Before I had ME, I happily worked as a full-time lecturer for seven years, did classical ballet, contemporary dance and flamenco classes after work, travelled and lived an entirely full life. I have no history of mental illness, no current symptoms of depression and have never taken any medication for these conditions. Considering the appalling misunderstanding of this illness and terrible social pressures, I am amazed by, and proud of, the bravery of ME sufferers across the country. For my part, I find misunderstanding of this illness as difficult to cope with as the illness itself. Maybe it's time for psychiatrists to address their unhelpful beliefs about this illness and their repressed reasons for continuing to block biomedical research. - Sarah Page 41/72

42 Publizr Home

You need flash player to view this online publication