In 2005 overleed op 32-jarige leeftijd Sophia Wilson: klik hier en hier.

De officiële doodsoorzaak volgens de lijkschouwer: nierfalen als gevolg van CVS (ME).

Ook werden ontstekingen van het zenuwstelsel vastgesteld: encephalomyelitis: klik hier.

Meridian TV maakte twee dokumentaires over Sophia Wilson en ME: klik hier en hier.

De moeder van Sophia Wilson, Criona Wilson, heeft een website geopend

waarop zij d.m.v. antwoorden op brieven etc. "verantwoording aflegt"

voor alle akties die zij tijdens het leven en na de dood van Sophia ondernomen heeft.

Om de website van Criona Wilson te bezoeken, klik op onderstaande afbeelding

De zus van Sophia zoekt een uitgever voor haar boek over het leven van Sophia en ME.

Een fragment:

Sophia and M.E.

When my mum told me Sophia had M.E., I was living in New York and frankly I was not especially worried about my sister. After all it was only M.E, it is not as if it were a serious disease, it wouldn’t kill her. How wrong I was. I have written a book about my amazing sister Sophia and what happened to her. Back in 1999, I had somehow formed a negative opinion about a disease I actually knew very little about. That view was that M.E, was all in the mind, and a bit of a luxury, western illness.

That warped view I had of M.E. was shared by many people. It is not people’s fault for having such misguided views about ME considering the immense propaganda surrounding this disease. I was probably the most closed minded person in the world about ME. To have the glimmer of understanding I now have about ME, took an immense amount of evidence and experience. My sister, who I adored, not only was extremely ill from ME, but for the first two years of Sophia’s illness I didn’t take her disease seriously. Worse still I even trained and qualified and worked as a nurse during the time she was ill and I still didn’t understand ME. I was embarrassed that Sophia had only ME, and not a recognisable sympathy getter disease like cancer. Even when Sophia died, I may have told my boyfriend what she died from, but I told no one else and avoided the question, because I couldn’t face the endless explanations people expected. I didn’t voluntarily tell anyone what Sophia died from till over eighteen months after her death. The not being believed stigma was that strong. In fact it wasn’t till I wrote the first draft of ‘Sophia and M.E’ that I began to see how utterly prejudiced and closed minded I had been, and how successful the propaganda campaign against ME had worked on me. If there was ever a difficult person to convert, it was me. If belief in ME as a serious disease had been the Jehovah’s Witnesses’ knocking at my door, not only would I have not answered the door, but I would have tunnelled out, changed my name and appea-rance and escaped to another country. I didn’t want to be converted to knowing that M.E can be a deadly neurological disorder; but the truth is relentless. This is the truth.

Before Sophia got the disease of Myalgic Encephalomyelitis (ME), I never gave the disease much thought. Had I been pushed for a reaction to this disease the words yuppie flu, self indulgent and boring might have been used by me. Little did I know in 1999, when I was living in New York, that this ‘insignificant’ disease, ME/CFS would kill my sister. Not only that but the medical establishment would mistreat and misunderstand Sophia to such an extent, that my sister was accused and treated as if she were inventing her illness. Sophia was gravely physically ill, yet it was the doctors’ deeply entrenched view that ME was a mental disorder that greatly increased Sophia’s suffering and arguably brought about her early death at the age of 32.

The World Health Organisation has categorised ME as a neurological disease since 1969, yet in this country ME is treated by many doctors as a mental illness. The doctors (mostly psychiatrists) who are ‘experts’ in this disease have been the driving force behind the view that ME/CFS needs behavioural treatments. These medics, also have the Government’s ear and have monopolised ALL the money for ME/CFS directing it into treatments and research for a mental illness.

My sister was cared for by my mum and another carer. Sophia’s carers were accused of enabling her to be ill. This is very common with ME/CFS as I discovered in the writing of ‘Sophia and M.E’. After Sophia’s death, research done on her body revealed her spine had 75% dorsal root ganglionitis, proof of the physical disease of ME/CFS. It’s just a shame that the doctors had to get the police to kick down the door to my sisters flat, and then section her into a mental hospital, the result of which killed her, when those medics could have so easily taken some physical tests on Soph to see if she was faking her horrendous symptoms. Doctors do not test for ME because it “reinforces aberrant illness beliefs”

This book is about vastly more than Sophia’s six year battle with ME/CFS and what happened to her in the health care system, and what her carers went through. ‘Sophia and ME’ is not so much about what ME did to my sister but it was she did with her ME. Her journey was as much a spiritual journey as it was a physical battle. I have used flash back scenario’s in the book to share what my sister was like before she became ill with M.E,. including the year we spent travelling together in Africa.

‘Sophia and ME’ also includes diary excerpts of the last diary my sister was ever able to keep and it clearly shows her bewildered descent into the hell of ME/CFS. This book also shows her amazing spirit and how against all the odds and DESPITE being un-believed by the medical profession Sophia did not turn into a bitter person, she actually turned all her pain and frustration and isolation into love of others, and her compassion was extraordinary. Woven within the arrogance of Sophia’s treatment by some in the medical profession, are stories of many quiet heroes who helped my sister despite not understanding the nature of her disease, they believed her; a priceless gift in this case. Sophia was not a victim, but she could have easily been turned from a patient into a victim by psychiatrists. Sophia’s true nature was that of a warrior, she stood her ground and was a fighter in her life, in her illness and in her death. My sister knew she was physically ill not mentally ill and lived and died her beliefs. Sophia took the bar or courage, she not only raised it but she threw it into orbit.

Treating a physical disease with mental health treatments is just that, mental.

“Our patients are terribly ill, misunderstood,

and suffer at the hands of a poorly informed medical establishment and society.”

(Professor Nancy Klimas, University of Miami, AACFS

Incoming Presidential Address: Co-Cure, 21st March 2005)

This book is currently seeking representation and publication.

Interested parties please contact Rochine1@hotmail.com