Sophia Mirza
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Sophia Mirza (1974–2006) was a person in the United Kingdom who was reported to have died as a direct result of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). On Tuesday, June 13th 2006 a coroner of Brighton and Hove Coroners Court, UK, recorded the cause of death of this 32-year-old woman as acute anuric renal failure (failure to produce urine) due to dehydration as a result of CFS." [1] According to Sophia's mother, Sophia became intolerant to water and managed only 4 fluid ounces per day[2].
Erroneously, some claimed this to be the first recorded death attributed to ME/CFS. A correction printed later by the New Scientist attested this was not the first case[1], and sporadic fatalities can be traced back at least to 1956[3].
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[edit] Inquest
Mirza's spinal cord showed the inflammation common amongst ME sufferers. Dr Dominic O'Donovan, a neuropathologist at Oldchurch Hospital in Romford, United Kingdom, who examined Mirza's spinal cord as part of the inquest into her death "...reported that the spinal cord looked normal but that he had found that 4 out of 5 dorsal root ganglia were abnormal and showed disease." The Inquest into the Death of Sophia Mirza - Invest in ME. The pathologist concluded that "the changes of dorsal root ganglionitis seen in 75% of Sophia‘s spinal cord were very similar to that seen during active infection by herpes viruses (such as shingles).” [Sophia's Story] Reactivation of Herpes virus infections is common in ME patients.
Abhijit Chaudhuri, a consultant neurologist at the Essex Centre of Neurological Science, claimed the inquest was rigorous and that other causes of death, including sleep apnoea and drug use, were discussed and discounted. Drug use in the preceding two years before death would have rendered the diagnosis of CFS inaccurate. However the inquest established that if Mirza "...had ever taken such drugs it was 7 or 8 years before she became ill and was therefore irrelevant."
[edit] Implications
Dr O’Donovan and the local pathologist, Dr Rainey, claimed that “ME” was an old-fashioned term which was why they used CFS. It was also stated that inflammation of the muscle was not found but "ME describes inflammation of the ... muscles"; however it is not muscle inflammation which is part of an ME definition, but muscle pain, tenderdness and post-exertion weakness.[3][4][5][6]
Originally termed benign myalgic encephalomyelitis, although deaths were relatively rare the "benign" epithet was later dropped as, this was thought by experts of the time to be misleading although it remains in the ICD coding from 1969. One of the five monkeys inoculated from humans during the 1949-1951 Adelaide epidemic died and was found on post-mortem by Pellew and Miles (1955) to have inflammatory infiltrations into the sciatic nerves and severe myocarditis.[4] Of the post mortem he carried out, Dr Andrew Wallis said: “There are in the entire diencephalon, particularly around the third ventricle, numerous small haemorrhages, which extend into the adjacent parts of the mid-brain. Similar haemorrhages can be seen in the corpora mamillare. The haemorrhages are mostly around the small vessels but some are also to be seen in the free tissue. This is a significant finding”.[3] Professor Hugh Fudenberg from South Carolina stated in 1992 that there is “a greater death rate than normals in the same age range”[5]
In their 2003 Consensus Guidelines, Carruthers et al state: "Infrequent deaths have been reported in the acute stage due to orthostatic cardiac irregularity"[6] and in their own summary of the guidelines modify this to "Relapses can occur several years after remission. Progressive degeneration of end organs, particularly cardiac or pancreatic failure, may result in death, and suicide is a risk"[7]
Specialist Dr Paul Cheney, who has studied and treated patients since the 1984 Lake Tahoe epidemic which sparked off the CDC's involvement, gave a Testimony before the US FDA Scientific Advisory Committee on 18th February 1993, in which he stated “we have lost five patients in the last six months. Two by suicide and three by intercurrent infections. All were in a progressive, debilitated state.”[8]
Published studies on deaths using the international CDC CFS criteria, have shown conflicting results. One study [9] found increased rate of premature death due to complications such as heart failure, cancer and suicide. The increasing heterogeneity of the CFS definition is often pointed out.
An ongoing, world-wide patients' memorial list is maintained by the US charity The National CFIDS Foundation (NCF), although not all fatalities will have been directly attributed to ME/CFS.
A famous death within the ME/CFS community was that of 19-year old Australian Alison Hunter, whose mother gave her name to the Alison Hunter Memorial Foundation. Alison's mother, Christine, a staunch ME/CFS advocate, was honoured for her support of those with ME/CFS in January 2006 when she was made a Member of the Order of Australia.
One of the Mirza inquest pathologists said, "My work supports the inflammation theory because there was inflammation in the basal root ganglia”, and Dr O’Donovan stated that psychiatrists were baffled by Sophia’s illness, but that “it lies more in the realms of neurology than psychiatry, in my opinion”.
Nevertheless controversy as to whether ME is a neurological, psychological or immunological condition persists. Groups such as Invest in ME and the ME Association say the coroner's ruling shows that ME/CFS is a neurological condition.
[edit] References
- ^ a b New Scientist| First official UK death from chronic fatigue syndrome.
- ^ Sophia's story
- ^ a b c 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
- ^ a b Parish G; A Review of "The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia, American Journal of Medicine, 1959",ME Research UK
- ^ a b Nightingale Research Foundation; Goldstein, Jay E.; Byron M. Hyde (1992). The Clinical and scientific basis of myalgic encephalomyelitis/chronic fatigue syndrome. Ogdensburg, N.Y: Nightingale Research Foundation, 628-633. ISBN 0-9695662-0-4.
- ^ a b Carruthers BM, Jain AK, De Meirleir KL, Peterson DL, Klimas MD, Lerner AM, Bested AC, Flor-Henry P, Joshi P, Powles ACP, Sherkey JA, van de Sande MI (2003). "Myalgic encephalomyalitis/chronic fatigue syndrome: Clinical working definition, diagnstic and treatment protocols". Journal of Chronic Fatigue Syndrome 11 (1): 7-36. DOI:10.1300/J092v11n01_02
- ^ Carruthers, van de Sande; Overview of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Guidelines A Consensus Document. 2005 pub. Carruthers & van de Sande ISBN 0-9739335-0-X
- ^ Cheney, Paul MD; The National CFIDS Foundation, National Forum 1993
- ^ Jason L, Corrad K, Gress S, Williams S, Torres-Harding S; Causes of Death Among Patients With Chronic Fatigue Syndrome. Health Care For Women International, Volume 27, Number 7, August 2006 , pp. 615-626(12)
