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
Stonebird welcomes the inclusion in the New NICE guidelines of the need for a Risk Assessment for interactions with people with Severe and Very Severe ME/CFS. Having spoken up about and raised awareness of the importance of this issue for a very long time, we are particularly pleased to see that this has been included as standard procedure. We hope it will help to protect people. This is what we have to say about RISK Assessment: RISK ASSESSMENT IN SEVERE/VERY SEVERE ME https://stonebird.co.uk/morenotes/index.html It is a massive risk for anyone diagnosed with Severe/Very Severe ME to let any professional into their life. Very Severe ME is particularly so outside anyone's normal experience that it is extremely hard to comprehend or understand or know how to safely engage with the person. Our (painful) experience, over decades, has taught us the importance of making sure that professionals behave safely. Information, therefore, should be provided to the person concerning the