Severe M.E. Information Pack


Severe M.E. is a cruel and physically disabling illness which wrecks the lives of thousands in the UK and millions worldwide. I know because it took my life for several years. One of my promises back then was to do all I could, when able, to help the Family and Friends of Severe M.E. Patients understand the nightmare that their loved ones are going through; what Patients and their Carers have to battle against every day, and how the understanding, support and compassion of Family and Friends can make such a dramatic difference to their speed of recovery. Hence this Blog and the writing of my 'Understanding Severe M.E. Information Pack'. I do so hope that both help guide you through the hellish maze that is Severe M.E.

Email understandingsevereme@hotmail.co.uk for details

Sophia's story

Hi there everyone, sorry this posting has been delayed, I got floored by a nasty cold for a couple of weeks, pretty rotten but as every recovering ME patient understands, always a relief to come out the other side.

I was going to talk about my 2000 admission to Professor Findley's specialist ME/CFS Unit Romford, but I stumbled across a website last week that I just have to share with you: www.sophiaandme.org.uk.  I urge everyone to visit this site and read the story of a young girl called Sophia who had Very Severe ME, was sectioned and incarcerated in a Mental Hospital by her ignorant, arrogant and cruel Doctors who insisted on treating her as if she was suffering from a mental illness, rather than a disease clearly categorized by the World Health Organisation as being a physical neurological disease.

Sophia never recovered from that incarceration. She died in 2005.  Her treatment and death must never be forgotten.

I read her story and wept, as I am sure you will too. I found myself reflecting on just how lucky I was not to suffer the same fate as Sophia, which so easily could have been the case had I lived in another postcode, had I not been fortunate enough to receive the right treatment at the right time; and then feeling a wave of fury so intense, so raw, to realise that severely affected ME Patients are still being treated so inhumanely by some members of the Medical Establishment. I know from personal experience that there are many wonderful, caring, Doctors, Nurses, OTs, Physios, Dieticians within the NHS who really do understand Severe ME and their numbers are growing; however I also know that there are many, many more who do not nor do they seem to want to even try and understand the hell their Patients are enduring.

So what can we do?  Shout Sophia's story from the roof tops.  Tell every one you know about her website.  Do not let Sophia's death be in vain.

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