In 1993 I was effectively paralysed due to very severe M.E. and I lost the ability to speak, feed myself, sit up or write my own name. Like many pwme who don't respond to, or in my case deteriorate, following NHS "treatment" with Graded Exercise Therapy, I had been abandoned by my local GP practice a long time ago. My family was shunned. We were told my disease was a result of my negative mindset, or was "just" depression. I had to be spoonfed at this time because I had lost the strength to lift food into my mouth. At one stage, I began to also have difficulty with chewing and swallowing. My parents, who were then my full time carers, became worried and didn't know what to do. I couldn't physically get to the GP surgery, so they took me to A&E on a stretcher. The registrar in A&E declared, after a 5 minute examination of my nervous reflexes, that there was nothing wrong with me. He did, however, propose to keep me in hospital for treatment
Research, writing, campaigns and consultancy on disability inclusion. Leading the conversation on energy-limiting conditions