Showing posts from March, 2014

Stop !


It is so easy to abuse a person with Severe ME

Linda Crowhurst My illness path is littered with wrong decisions, wrongful trusting in people and systems who should have helped me, but instead damaged me, even with good intentions, then ducked out of the responsibility of putting things right or owning their mistakes, wrong treatments, misinformation, misinterpretation, misrepresentation and downright harm, which has ultimately led to trauma and deterioration, alongside just simply letting me down. It takes a long time to feel able to talk about abuse, when you feel you have experienced it first hand. It takes time to tear yourself out of the sense of shame and fear that it engenders in you. Fear that wraps itself around your every thought and burrows deep into your guts, like some dirty unwanted parasite, burrowing in deeper and deeper, gnawing destructively within you, out of sight. It is hard to actually say,' I have been abused.' It still creates anxiety and anger, to think about the experience, let al

Why ?

Why ? Stonebird response to “ME/CFS is an organic disorder” by Professor Malcolm Hooper If the case of Ronald Page v Simon Smith ; enshrined in English Law, in 1996, that ME is physical not psychiatric (Hooper 2014), why has the NHS and DWP used psychiatrists known to believe and promote ME as psychiatric, to advise them on policy and practice, on the fatigue clinics, the psychosocial pathway, the treatment protocol and the MRC research funding for the last two decades when they : · ignore the science and the physical reality of ME? · are determined to “eradicate” ME by asserting that it is nothing more than an “aberrant illness belief” ? · focus on the single symptom of chronic “fatigue” and ignore all the other significant symptoms and signs of ME, especially the cardiovascular, neurological and immunological ? · deliberately dilute the case description so that it specifically includes somatisation disorders ? · advise that no tests sh