Brighton, United Kingdom
|Died||25 November 2005
|Cause of death||Acute renal failure directly attributed to chronic fatigue syndrome (CFS)|
|Known for||First death in the United Kingdom directly attributed to CFS|
Sophia Mirza (1973–25 November 2005) was a person in the United Kingdom who died as a complication of chronic fatigue syndrome (also known as myalgic encephalomyelitis in the UK). An inquest was conducted to determine her cause of death, with the coroner ultimately recording it as acute renal failure due to dehydration, caused by CFS. Advocacy groups such as Invest in ME and the ME Association say that Mirza's inquest shows that CFS is a neurological illness.
Mirza was born in the United Kingdom in 1973, one of four children to Irish/Asian parents. She visited Africa at the age of 19, traveling and working throughout the continent and was infected with malaria twice while there. At the age of 26 Mirza fell ill with what appeared to be the flu and shortly afterward became convalescent, for several years only able to leave her bed for short periods of time. She became sensitive to chemicals such as perfumes, washing powder, car fumes and detergents, and was also badly affected by the electromagnetic fields of TVs, radios and even human beings. Her sensitivity to sound and light meant that she had to live in a darkened room wearing eye pads and earplugs. Mirza refused to attend an appointment with a consultant immuno-pathologist at Bart's Hospital in 2000 on the grounds that she did not want to take 'conventional medicine'. As her condition continued to deteriorate, concerns were raised by numerous family members and friends that the care she was receiving from her mother was inadequate. At around the same time a referral was made to a centre specialising in the treatment of Chronic Fatigue, but Mirza turned down the placement after hearing that treatment was biased towards psychological methods and that if patients did not improve they were given a different diagnosis before being sent home. As complaints about her living conditions continued, the suggestion was made that she should be assessed under the Mental Health Act to determine what components of her issues were physical, and what psychological. Mirza refused the offer of being looked after by professional carers rather than her mother, and also rejected offers of support from the Community Mental Health Team. As the situation progressed concerns were raised about Mirza's capacity, but at first the suggestion that she may lack capacity to make the decision to refuse treatment was rejected and no grounds for a Section under the Mental Health Act were found. However, her psychiatrist felt that some of her beliefs were "bizarre". In July 2003 Mirza was sectioned for two weeks by her doctors, who had come to believe her condition was psychosomatic, an action which her mother believed severely worsened her condition. Her mother claims that Mirza's physical symptoms were treated as a mental condition and her carers were accused of 'enabling' her.
For two years following her sectioning, Mirza's health deteriorated. By September 2005 she took a significant turn for the worse, developing intolerance to most of the food she consumed, ear infection and severe pain, and was only able to consume a small amount of water. Mirza died on 25 November 2005. Initial autopsy results were inconclusive for her cause of death, but the results of an inquest released on 13 June 2006 determined the cause of death to be acute renal failure due to dehydration. Though initially reported by New Scientist as the first death worldwide ascribed to CFS, the magazine later acknowledged that other deaths had been directly attributed to CFS in the United States and Australia. Fatalities have been attributed to CFS or myalgic encephalomyelitis since at least 1956.
An official inquest was held to determine Mirza's cause of death, including an autopsy. The coroner concluded Mirza died as a direct result of CFS. Considered and eliminated were sleep apnea, drug use, and all other possible causes of death that could have been consistent with the autopsy results. A neuropathologist testified at the inquest that four out of five of Mirza's dorsal root ganglia showed abnormalities and evidence of dorsal root ganglionitis, inflammation of the dorsal root ganglion. A neurologist who consulted on the inquest stated the changes in the spinal cord may have been the cause of the symptoms Mirza experienced as part of her CFS. The findings were cited as a demonstration that CFS is a physical condition, with implications for physical roots to CFS traditionally rejected by psychiatrists. There was disagreement over whether to use the term CFS or ME in the final report with the pathologist preferring the term CFS due to the lack of muscle inflammation, and because he saw CFS as the modern term.
- Wilson, C. "The Story of Sophia and ME". Retrieved 2008-09-11.
- "Fatigue syndrome ruling welcomed". BBC. 2006-06-23. Retrieved 2008-09-11.
- Hooper, R (2006-06-16). "First official UK death from chronic fatigue syndrome". New Scientist. Retrieved 2008-09-11.
- Wallis, A. L. An investigation into an unusual disease seen in epidemic and sporadic form in a general practice in Cumberland in 1955 and subsequent years. MD Thesis, University of Edinburgh 1957
- Carruthers, BM; et al. (2003). "Myalgic encephalomyalitis/chronic fatigue syndrome: Clinical working definition, diagnostic and treatment protocols". Journal of Chronic Fatigue Syndrome. 11 (1): 7–36. doi:10.1300/J092v11n01_02.
- "The Inquest into the Death of Sophia Mirza". Brighton Coroner’s Court. 2006-06-13. Retrieved 2008-09-11.