Journal of IiMER biomedical research but everyone's input is welcomed - be it just ideas or moral support for other people's fundraising. Whilst raising funds for biomedical research the campaign has also raised much needed awareness and this has allowed more correct information about ME to be disseminated. Let's do it for ME! is a patient-driven campaign to raise awareness and vital funds for the UK Centre of Excellence for ME performing translational biomedical ME research, clinical assessment, diagnosis and treatment for patients, and training and information for healthcare staff based at the Norwich Research Park in the UK but working collaboratively with international biomedical researchers. The Let’s Do It For ME campaign has been running now for 7 years. http://ldifme.org “We constantly receive letters from the Department of Health stating that very little is known about ME and yet without doctors like Dr (Nigel) Speight, who are willing to believe in and listen to children with ME and learn in the process, many patients would have little hope for a better and safe future. Paediatricians and doctors in the UK generally demonstrate an overwhelming degree of ignorance toward ME– either disbelieving it exists, misdiagnosing other diseases in its place, failing to identify the potential consequences of severe ME and failing to spend any time in improving their education about the disease. Sometimes they just continue to hold their pet theories on this disease. The Institutes of Medicine concluded in their report of 2015 [9] that ME is an organic disease. The IOM report looked at the effects on children from this disease [10]. “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 paediatric ME/CFS include the loss of normal childhood activities and in some extreme instances, inappropriate forcible separation of children from their parents” As part of the research review carried out the IOM reported on an Australian study of 189 adolescents by Rowe and Rowe concluded that evidence for somatization disorder among young people with ME/CFS was negligible. “They all note that ME/CFS symptoms often make it more difficult to do schoolwork, so children and adolescents with ME/CFS may be misclassified as having “school phobia.” Invest in ME Research deplore the concocted term school phobia, or pervasive refusal syndrome, and those promoting these terms in relation to ME/CFS, as they have never applied to children with this disease.” Invest in ME Research - Ignoring the Elephant in the Room http://www.investinme.org/IIME-Newslet-1604-NS999.shtml www.investinme.org Page 24 of 82
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