SEVERE M.E DAY – A COMMEMORATION OF SOPHIA MIRZA 1973-2005

Today, August 8th, would have been Sophia Mirza’s 40th birthday.

To commemorate her I am writing this blog so that her plight may never be forgotten.

Sophia Mirza suffered the severest form of M.E. M.E is recognized as a neurological disease by the World Health Organisation and was understood as such until 1988 when a new criteria was born.

Sophia Mirza was tragically ill.

The following information is taken from the website her mother, Criona Wilson, built to raise awareness of the dire situation ME patients are finding themselves in, http://www.sophiaandme.org.uk

“Sophia was the youngest of my four children. As a child she had chicken pox. When she was 17 she was a passenger in two separate car crashes. Shortly afterwards, she was hospitalized with suspected meningitis and was given a lumbar puncture. At 19 she went travelling and working in Africa, before which she had to have multiple vaccinations. Whilst in Africa she had two doses of malaria.”

“In 1999, Sophia got the ‘flu. She could not recover from it. By December of that year she could only leave her bed to have a bath. In June 2000, she was moved into the tenth floor of a high-rise block of flats. There, she would have a bath each day where she relaxed for about an hour. Within three months she “crashed” and had become bed-bound. I could not understand why, as she had done nothing different during this time.”

“Her room had to be completely “blacked-out” and she also wore eye pads as any form of light seared her eyes and affected her in other ways. She had to wear ear plugs as any noise or sound, even the sound of a voice, made her even more ill. She could not bear to be touched for the same reason, even though she craved the human touch and the comfort it gave. Since that time she had been unable to have either a bath or a hair wash as water too magnified her symptoms. She was only able to lie on her right side. She had, for most of this time, been unable to speak. She had been unable to read or write, listen to the radio or have any electrical gadgets in her room. She was unable to have visitors. Her G.P was at a loss as to what to do. She suggested that Sophia was put “away in a home so her mother could get on with the rest of her life”. Her mother did not agree. Years ago, she had nursed patients with all sorts of diseases; never had she seen anyone so profoundly ill in so many diverse ways, as Sophia.”

Sophia’s doctors 100% believed she was suffering from a mental disorder. Her mother battled with the authorities and medical profession to prevent Sophia being put through this torment when she was clearly physically sick, but it was to no avail.

Criona was told that if Sophia refused to go to Old Church Hospital in Romford, or if she did not recover within the following 6 months, that she would be sectioned under the Mental Health Act, then added that if she tried to stop this, then the doctor would go to the courts to have her removed as the nearest relative. Furthermore, if she did not open the door when they would come to take Sophia away, that the police would be called to “smash the door down”. When asked how much better Sophia would get by these proposed actions, the reply was given that it was “none of your business, that it was for the courts to decide”.

In July, the professionals returned – as promised by the doctor. The police “smashed the door down” and Sophia was taken to a locked room within a locked ward of the local mental hospital.
Shortly after she managed to get referred back home, the damage inflicted by the hospital made it too late. From Tuesday 22nd November, Sophia could not move an inch, neither could she sleep.

On Friday 25th she died.

The pathologist at Brighton Coroner’s Court stated,

“M.E describes inflammation of the spinal cord and muscles. My work supports the inflammation theory. There was inflammation in the basal root ganglia”

Another pathologist said, categorically, that dorsal root ganglioitis is a pathological condition. He said psychiatrists were baffled by her illness but that “it lies more in the realms of neurology than psychiatry, in my opionion”.

Some of the worlds’ top institutions such as Stanford University, UCLA and Harvard have found links to ENTEROVIRUSES, particularly in the brain, and the HHV6 virus in spinal fluid in ME patients.

Despite all the research, the British system works like this. You are diagnosed with M.E, sometimes known as CFS, Chronic Fatigue Syndrome, but its real name is M.E.
Bearing in mind the NHS clinics & NICE Guidelines categorically state that they do not cater for the severely affected – which is a whole different spectrum of illness altogether.

The NHS clinic refers you for graded exercise therapy. You cannot even sit up in bed you are so weak so you politely say no thank you. You are then deemed a danger to your own health and mentally unfit to make decisions for yourself and psychiatry are called in.

This happens a lot when patients are admitted to hospital for ME, I’ve seen many cases where this happens. The worse case scenario is that you are removed from your own home, sectioned under the mental health act and placed in a ward where exercise is forced upon you.

This is real and is happening all over the world. Justina Pelletier is a recent example which hit the mainstream media.

If this story shocks you, saddens you and makes you want to do something about it, please join the NEUROIMMUNE ALLIANCE Facebook page for ideas, projects and awareness campaigns.

RIP SOPHIA MIRZA

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