The Lived Experience of Severe ME
(voted one of the top 50 ME blogs on the internet 2017.)
I ran down the garden, jumped on a bench, punched the air yesterday - I had just qualified, after a year's study, as a Life Coach !! Very exciting, although physically limited by caring for my wife, there is no end to the creative ways I can build upon this experience. Wonderful, life changing learning, so overjoyed I completed the course.
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
Feature : Medical Research : Dangers of research into chronic fatigue syndrome Nigel Hawkes BMJ 2011 ; 342 : doi: 10.1136/bmj.d3780 (Published 22 June 2011 ) [ Extract ] [ Full text ] [ PDF ] Who are the real victims ? Linda Crowhurst , Very Severe ME patient Norfolk Because a few people are behaving inappropriately, it does not mean that the real physical needs of people with neurological ME are not a genuine issue. It does not mean there are not valid issues about PACE that are right to be raised. It does not make the findings of the PACE Trial any more valid for people with ME - and it certainly does not negate the ongoing biomedical neglect of patients, which is directly a result of the confusion that the psychiatric lobby has created , regarding the proper treatment of ME, a WHO-classified , serious neurological disease. Nor does it make right the implication that ME is a mental health condition requiring therapy as treatment. Peter White , the lead investigator o
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