Journal of IiMER Volume 13 Issue 1 Invest in ME Research Children with ME Losing school, losing contact to friends, losing any social life - isolation. Could it get any worse? In the UK yes! A child may be branded with the scandalously contrived soundbite of Pervasive Refusal Syndrome or some other such nonsensical catchphrase? “There is clear evidence of the impact of ME/CFS on the education and social development of these young people. The stigma and social effects of pediatric ME/CFS include the loss of normal childhood activities and in some extreme instances, inappropriate forcible separation of children from their parents” - Institute of Medicine (IOM) Report - “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness” February 2015 For any parent the event of their child being diagnosed with a disease is one of the worst of experiences that they will ever have. To then discover that there is no treatment, let alone a prospect for any cure, will likely make them search for the reason(s) why - expecting to find answers, but instead finding more questions. To realise that this disease is ignored by governments, restricted from any level approaching adequate funding by research councils, treated inappropriately by institutes supposedly responsible for excellence in care, and used as a means to build careers and support egos for others – all this makes it even more incomprehensible. To learn that a powerful and influential lobby has been largely responsible for maintaining the above and even influencing the establishment policies and the media portrayal of this disease as a condition that can be changed just by trying harder or thinking differently – then the nightmare turns into a continuous horror. For children, of course, the future is often upended - with possible additional consequences caused by the disease, apart from the direct symptoms from the condition itself. Invest in ME Research (Charity Nr. 1153730) Yet, despite this surreal and sometimes ugly scenario, we see many examples of the resilience and courage of children with ME - young people who deal with the effects of ME on their health and their lives and yet continue to hope and believe in a better future. The great majority remain positive and maintain an unbelievable lack of any resentment for their situation - blaming nobody, stoically handling this disease . Quite remarkable. We have many examples also of young people supporting the charity and using what possibilities they have to raise awareness and funds. Some take action themselves. Last summer we received this image from Professor Kristian Sommerfelt in Norway - a drawing by young Emma who so clearly explained in her image here what ME is like for a young person. In the UK an estimated 25,000 children have ME - but nobody knows for sure as data is not currently collected! There are so few paediatricians that understand ME - another failure of establishment policies. Even those who are qualified, knowledgeable and appreciated by parents of children with ME are given a hard time – see http://www.investinme.org/IIME-Newslet-1604NS999.shtml investinme.org Page 38 of 52

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