Journal of IiMER need to treat and investigate and actually trying too hard and over-investigating and treating with things that do not work, is the worst thing you can do for these patients. Immunoglobulins is one possibility, antibiotic therapy just in case there is an atypical infection such as Lyme disease, otherwise they just deserve tender love and care for their palliative symptoms. The last case was a German girl, the worst he had ever seen, treated the same way. She was in hospital, having severe pain, was tube fed and the mother was accused of arguing with the doctors about the treatment being provided. The girl was subjected to an activity regime, where she was put in a wheelchair every day. Dragged out of bed, put in the wheelchair - head strapped to the wheelchair because it kept falling. Shoved around the hospital, she was then exposed to a teacher, then exposed to a psychologist, and then exposed to a physiotherapist. She suffered this treatment month after month after month. Dr. Speight asked the doctor in charge: “Have you got her informed consent for this treatment?” and he said no! Dr Speight asked: “Do you have an assessment of her competence to give consent to this treatment?” Again the answer was no! It was not ethical, but they had a court order and the mother had no rights. Luckily, a nice female judge accepted my evidence and reversed the care order and released the girl from the hospital, restored the mother’s parental rights and allowed her to take her daughter home. Only two months after that ordeal you can see the girl returning, she is a smiling girl with glistening eyes, nothing like the girl from the hospital. She has been given no magical treatment, just the respect of her autonomy and human right and the company of people who believe in her. that usually includes subjective evaluations of both positive and negative aspects of life ”. For me something crucial was missing in this sentence namely that “Quality of life” also depends on the balance between these positive and negative aspects of your life. Starting from this perspective, I looked at how Myalgic Encephalomyelitis or ME affects my life. ME, completely changed my life. I went from an active working mother and wife, with two children - six and nine years old at the time- to a debilitated spouse and mum who could barely make it from her bed to the sofa and back. People around me had no idea what was happening to me and reacted with disbelieve and ignorance. My employer kept asking me to work from home, up to the point when I literally felt my brain sparking. My brother said: “If you were working for me, you would’ve been sacked a long time ago.” and my mother kept repeating I had to do more, she said I was lazy. I ended up losing all my friends, hardly saw any relatives and spend my days between four walls in the company of my husband and children. Nancy Van Hoylandt – Quality of life As an ME patient (and a patient representative) I asked myself what is ‘quality of life’? Looking for a definition I found this on the WHO website: “Quality of life is a broad multidimensional concept www.investinme.org After a few months my GP sent me to a psychiatrist. The seed of depression was planted. The psychiatrist recommended psychotherapy in a day care facility, so I went. This approach did not seem to work and after six months I was told they could not help me, blaming me for the failure of the therapy. By that time I was a complete wreck and needed more therapy to undo the damage from the first round of psychotherapy. My second psychiatrist would eventually apologise for asking too much, too soon, too fast, explaining to me there was more to my condition than meets the eye. I also followed months of hydrotherapy and Page 56 of 82
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