The Lived Experience of Severe ME
(voted one of the top 50 ME blogs on the internet 2017.)
Where are we going wrong ?
Here's an imaginary charity - what is terrifying is that it would probably be taken infinitely more seriously than the 25% Group , would attract many more members plus celebrity support , would exercise massive influence over national policy - and would easily be able to pay its staff large salaries. Where are the rest of us going wrong ?
The psychiatric abuse of Children with ME : some notes from the literature Greg Crowhurst 19 th August 2011 It is not that easy gathering together the information on this subject; yet it is so important ! The quotes below are the result of a lengthy search I have conducted. All the material is publically available, I have tried to follow copyright restrictions where stated. 1. “The number of parents in the UK being threatened by doctors who say they will report families to child protection agencies has doubled in the last year. Fifteen year old Leanne Murray has severe ME and struggles with a range of unpredictable symptoms of ME including nausea, muscle pains, post exertion fatigue and light sensitivity. “ When Lorraine took her to hospital with chest pains, doctors said there was nothing they could do. Leanne was sent home with no treatment and the consultant reported her mum to social services. A week later a social worker arrived on their doorstep in Coatbrid
Response to BACME (British Association for ME/CFS) Working Group on Severe CFS/ME Shared Clinical Practice Document Version 1 When you work with someone who has Severe ME you need to be more sensitive and aware than you can possibly imagine. Harm, even death for some, may follow poor treatment, care and ignorance. The frailty of someone with Severe/Very Severe ME cannot be exaggerated nor adequately described. You need to take the greatest of care. The problem with this BACME document is its underlying psychosocial values and attitudes. If you expect a person to get better, that will be your intention, that will be your goal, that is going to influence all your thoughts and actions in your caring role, especially if you set goals or limit care over time. The care provided by someone with a biomedical understanding of Severe ME is going to be funda-mentally different, however much the starting point of care might appear to be similar in this document, to the person who h
Pity Franz Kafka, who wrote to his love, in 1920 that “I’m mentally ill, the disease of the lungs is nothing but an overflowing of my mental disease.” (Sontag 1978) He actually had Tuberculosis. How awful it must be to have lived with the burden that you have been told that are severely sick because you think you are. (Sontag 1978) Pity Napoleon, Ulysses S. Grant, Robert A. Taft and Hubert Humphrey, whose cancer “was diagnosed as the reaction to political defeat and the curtailing of their ambitions. How awful it must be to be seen as a “cancer personality”; as a “loser”. These days, it is incomprehensible that TB and Cancer were once seen as a mental illness! But how can it be that the WHO classified, yet poorly understood physical disease, Myalgic Encephalomyelitis, a disease that places a greater physical burden on patients than schizophrenia, cancer, stroke, multiple sclerosis and Type I diabetes, (Johnson 2015) is widely regarded as mental illness by medicine, when there i