“How do I validate him in the face of such profound personal loss and the outrageous denial by the medical community?” DenialInvalidationMedical Neglect Book:Severe ME : Notes for Carers Source: Severe ME : Notes for Carers
“Everything I thought I understood about disease research, drug development, and the delivery of clinical care has been turned on its head. This isn’t science or medicine as I had come to know them but rather a parade of psychogenic bias, neglect, bad science, flawed public policy, and the political agendas of powerful people and institutions that have sentenced ME patients to the medical equivalent of the most squalid slum in the poorest country on earth. The political decisions taken over the last thirty years have polluted research, perverted clinical care, and shipwrecked ME patients with a life-threatening dose of stigma, disbelief and medically induced harm.” CfsChronic Fatigue SyndromeMyalgic EncephalomyelitisM E CfsM E Author:Mary Dimmock
“I wake up every morning, thinking that this can't really be happening. What parallel universe have I entered?” CfsChronic Fatigue SyndromeMyalgic EncephalomyelitisM E CfsM E Book:Severe ME : Notes for Carers Source: Severe ME : Notes for Carers
“Over the years, I have cared for loved ones with advanced Alzheimer, late stage cardiovascular and renal disease and Stage 4 cancer. But none of those experiences prepared me for being a carer for a Severe or Very Severe ME patient. The breadth, severity and unprediciability of the symptoms and dysfunction from one person ro the next and from one day to the next can be hard to comprehend and mainstream medical education doesn't help.” CfsChronic Fatigue SyndromeMyalgic EncephalomyelitisM E CfsM E Book:Severe ME : Notes for Carers Source: Severe ME : Notes for Carers
“How do I deal with my own frustration and outrage at the injustice of what has happened to my son and all ME patients and with my own inadequacies and inability to change that?” CfsChronic Fatigue SyndromeMyalgic EncephalomyelitisM E CfsM E Book:Severe ME : Notes for Carers Source: Severe ME : Notes for Carers