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 ?
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
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
We remember them with sadness that they are no longer here with us We remember them with frustration that they were not helped We remember them with anger that they are gone For we remember All the hurt All the denial All the extremity of pain All the neglect All the harm All the harrowing moments All the suffering All the grief And we weep with gratitude For their precious lives For their tremendous personal strength For their utmost conviction For their forthrightness in speaking out For their passion in life For their compassion to others In a hostile, empty world. We remember and give thanks For who they were And who they will always be In our hearts.