Journal of IiME Volume 3 Issue 1 www.investinme.org Call to Action - Why I Support Invest in ME (continued) It is scandalous that the very vulnerable ME patients are not only not helped, but actually discriminated against because they have M.E. Please help us change this. Anyone can get M.E. Sophia was half Pakistani and half Irish. This is not just a white person’s disease. We are all at risk and we need urgent research and treatment into the physical nature of this disease. Behind the closed doors of courts, children are being torn away from their parents. These parents are silenced by these same courts. Tell the mental health sector to 'Get your hands off M.E' and put M.E back in its rightful place, back where it belongs, back to where the W.H.O. put it in 1969, back in the field of physical disease. ME STORY I now live on DLA and have to use a wheelchair. I spent years being told I had depression, I was attention-seeking, difficult, lazy. I tired too hard to do the things other children/ young adults did and failed. I felt hopeless and helpless many times. However I refused to give up fighting. THREE years ago after another round of arguing with doctors and neurologists and being told by a neuro psyche I was not genuinely ill my GP found missing notes from the 1980s - notes that had been missing for over 20 years. There in black and white were handwritten notes than indeed I had attended the doctors who had noted possible encephalitis. - Lynn Invest in ME (Charity Nr. 1114035) I have been diagnosed with CFS they (the NHS) will not have ME in their vocabulary. Everything is a fight, to be heard, to be listened to, just to be BELIEVED. I wish with all my heart that I just was a bit tired like people think, I would chop off my arms to be just tired. My life is a process of trying to get through the day and perhaps I'll have a day where I'm not so bad - Maxine Page 38/76 ME FACTS In 2003, Byron Hyde, medical adviser on ME/CFS to the Canadian Government, pointed out that “ME in adults is associated with measurable changes in the central nervous system and autonomic function and injury to the cardiovascular, endocrine and other organs and systems. The patient with the diagnosis of ME/CFS is chronically and potentially seriously ill. These ME/CFS patients require a total investigation and essentially a total body mapping to understand the pathophysiology of their illness and to discover what other physicians may have missed. A patient with ME is a patient whose primary disease is central nervous system change, and this is measurable. The belief that ME/CFS is a psychological illness is the error of our time”. (The Complexities of Diagnosis. Byron Hyde. In: Handbook of Chronic Fatigue ME STORY
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