UK Coroners are now providing incontrovertible evidence that ME/CFS can lead to death. The UK authorities keep no statistics, so the actual number of deaths from ME/CFS remains unknown.
In 1992, a 30 year old woman in the UK who had suffered from ME/CFS for five years committed suicide; the post‐mortem study (using polymerase chain reaction) showed enteroviral sequences in samples from her muscle, heart, the hypothalamus and the brain stem. No enteroviral sequences were detected in any of the control tissues. The researchers stated: “The findings further support the possibility that hypothalamic dysfunction exists in the pathogenesis of (ME)CFS (and) they suggest that the chronic fatigue syndrome may be mediated by enterovirus infection and that persistent symptoms may reflect persistence in affected organs” (McGarry et al. Ann Intern Med: 1994:120:11: 972‐3).
In 1998, there was the well‐reported case of Joanna Butler, a young woman aged 24 from Leamington Spa, Warwickshire, who was severely affected by and died from ME/CFS. She was nursed at home by her parents and was bed‐bound for the last two years of her life and required tube‐feeding. Although she died of ME/CFS, her parents were suspected of having caused her death by administering too high a dose of a medically‐prescribed morphine‐related compound, and the local paper (Courier) reported that the
Warwickshire County Coroner (Michael Coker) ordered a police investigation. This investigation cleared them of blame but they were hounded to such an extent that they were forced to move away from the area (see the press reports in The Observer, 19th March 1998: “Tragic death of young ME victim” and the reports in the local paper, including the Courier, which carried a report on the ‘many who die each year’ of ME). 17 In January 2003 the wife of Richard Senior died of ME/CFS; the North Wales Coroner entered CFS as the cause of death on the death certificate.
On 4th July 2005 Casey Fero died of ME/CFS at the age of 23 in the US. The autopsy showed viral infection of the heart muscle. The pathologist was shocked at the state of Casey’s heart, which showed fibrosis indicating the presence of a long‐standing infection.
In November 2005 Sophia Mirza died of ME/CFS in the UK and the death certificate of 19th June 2006 gives CFS as the cause of death, with acute renal failure. Another UK death from ME/CFS occurred in May 2008 when a severely affected and courageous woman died in the North of England; her death certificate gives “Myalgic encephalomyelitis” as the cause of death. Evidence from autopsies of people who have died from ME/CFS is chilling.
In Sophia Mirza’s case (a 32 year old woman sectioned by psychiatrists who alleged that she was suffering from a mental disorder so she was kept in a locked ward and, according to her mother’s evidence, denied basic care), there was evidence of severe inflammation throughout 75% of her spinal cord.
This was one of three such autopsies spoken about by Dr Abhijit Chaudhuri at the Royal Society of Medicine meeting on 11th July 2009).
A 2005 autopsy in the US showed oedema of the lower limbs; the alveolar spaces of the lungs were filled with inflammatory cells and there were small emboli scattered throughout the arteries; there was marked congestion of the liver and spleen; the bowel was ischaemic; there was mild inflammation of the kidneys; there was also evidence of rhabdomyolysis (the breakdown of muscle fibres resulting in the release of muscle fibre contents into the circulation, some of which are toxic to the kidney); the bladder showed a hyperplastic epithelium; the thyroid showed colloid filled follicles, with scattered dystrophic calcifications and calcification of the small arterial walls; the right occipital lobe of the brain showed areas of degeneration and degenerated astrocytes, and the white matter surrounding this defect appeared puckered. The Medical Director of The National CFIDS Foundation (chronic fatigue immune dysfunction, a commonly‐used US term for ME/CFS), Dr Alan Cocchetto, commented: “Every time you look closely at someone with this disease, you see immense suffering. There appears to be no limit as to the human toll that this disease is capable of exerting on patients” (http://www.ncf‐net.org/forum/Autopsy.htm).