The 8th August is Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis, also known as Severe ME Day. It is held on the birthdate of Sophia Mirza, who was the first person in the UK to have their cause of death registered as Very Severe ME. Unfortunately, she is not the only one who's died from Very Severe ME now. Her experiences also highlight the extent of ignorance, misunderstanding, and mistreatment which continues to surround every aspect of ME.
Sophia’s Story – Written by her Mother, Críona Wilson
(This post was taken from an extract from www.sophiaandme.org.uk)
“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.”
“Sophia’s 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. Dr.Firth was at a loss as to what to do.
She suggested that I put Sophia “away in a home and get on with the rest of my life”. I did not agree. Years ago, I had nursed patients with all sorts of diseases; never had I seen anyone so profoundly ill in so many diverseways, as Sophia.”
“During one of my visits to Dr.Firth , I was told that Sophia had made herself ill and that I was keeping her ill and as long as I was looking after her she would never recover. She said that it would be better with me out of the flat and independent carers installed. In 2001, Dr.Firth approached Professor Findley at Oldchurch Hospital in Romford, telling me, for legal protection of the G.P. and the surgery. Sophia asked me to research the clinic, which cost thousands of pounds. They told me, when I pressed them for long-term results, that patients usually revert to the point from whence they started. I spoke to a couple of ex-patients who were afraid to have their names used; they said that this clinic was run on the lines of mental health and used Graded Exercise, although it claimed to be a neurological clinic. They also said that when patients did not get better that they were given a different diagnosis before being sent home. Sophia elected not to go to the clinic.”
“I was told that if Sophia refused to go to Oldchurch 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 I tried to stop this, then he , Dr. Baginski , would go to the courts to have me removed as the nearest relative. Furthermore, if I 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 I 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”. The
psychiatrist wanted to arrange for me to see a psychologist so that I could understand the good, that he ,Dr. Baginski , was doing to Sophia. I refused.”
“In July, the professionals returned – as promised by Dr. Baginski. The police “smashed the door down” and Sophia was taken to a locked room within a locked ward of the local mental hospital. Despite the fact that she was bed-bound, she reported that she did not receive even basic nursing care, where her temperature, pulse and blood pressure (which had been 80/60), were never taken. Sophia told me that her bed was never made, that she was never washed, her pressure areas were never attended to and her room and bathroom were not cleaned. The nurse asked me to cook for Sophia as the processed hospital food made Sophia more ill. Sophia also had to deal with all the nurses constantly going into her room and talking to her.”
“Dr. Baginski made it quite clear to Sophia’s solicitor that Sophia would not be released. Sophia’s solicitor then requested a tribunal, which was held two weeks after Sophia’s sectioning. The tribunal lasted 8 hours”
“They released Sophia. It was too late; the damage had been done. Sophia relapsed, not to where she had been before, in Spring 2003, but to a hell-hole to which she had never been. She never recovered from this “treatment”. For her it was the equivalent of being in a tsunami from May – July, but this one was man-made.”
“She never stood a chance.”
“Between 2003 -2005, Sophia struggled hourly / daily to get back to the point of health she had prior to her incarceration.
By July 2005, it seemed as if she had started to progress. In September, this monster of a disease took another turn. Sophia had become allergic to any and all types of food. Physically, she could eat, but the reactions were so severe, e.g. knives stabbing into her head, that this precluded her body being able to accept the food. Five weeks later, any sort of water or liquid had similar devastating effects on her; her glands would balloon-up and she felt as if the circulation in her legs was being cut off. She could only bear about 4 fluid ounces of water a day, which was used to moisten her mouth. At the end of October she got an ear infection. Her head and neck swelled-up like a football, she was in agonizing pain.”
“From Tuesday 22nd November, Sophia could not move an inch, neither could she sleep. On Friday 25th she died. I did not cry. I gave thanks that I had been able to keep my word that she would never be locked-up in a mental hospital again. All my grieving had been done during the previous 6 years and especially during the last 9 weeks, when I used to walk the streets with tears streaming down my face, knowing that there was nothing that I could do to help or comfort Sophia. Family and friends came to say their goodbyes to her.”
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