On 13th December 1988 Brynmor John MP died from ME/CFS. His experience of the illness was all too familiar: ‘Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it’. He found himself unable to dress; the slightest exertion exhausted him and it took days to regain his strength. He was irritated by the profusion of psychiatric comment and was trying to ensure better understanding of ME/CFS (Perspectives, Summer 1991:28-30). Brynmor John suddenly collapsed and died as he was leaving the House of Commons gym after having been advised to exercise back to fitness.
In 1992, Professor Hugh Fudenberg from South Carolina (a pioneer of clinical immunology and one of the most distinguished minds in the field, being awarded The Medal of the Institut Pasteur at the age of 32; he was also a Nobel Prize nominee) stated that there is “a greater death rate than normals in the same age range” (The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome: ed. BM Hyde, published by The Nightingale Research Foundation, Ottawa, Canada, 1992: page 644).
This was corroborated 14 years later by Professor Leonard Jason et al, who found that the three most prevalent causes of death in ME/CFS patients were heart failure, suicide and cancer and that the age of death is considerably younger than in the general population (Health Care Women Int 2006:27(2):615-626).
Perhaps the most tragic and well-known death from ME/CFS is that of Alison Hunter from Australia, who died in 1996 and whose death certificate stated the cause of death as “Severe progressive ME”. She was just 19 years old. The pathologist’s report confirmed that she had severe oedema of the heart, liver and brain. She had also suffered severe ulceration to her throat, seizures, paralysis, other neurological symptoms, and gastrointestinal paresis with failure of the gut and bowel. James Ibister, Head of Haematology at Royal North Shore Hospital, Sydney, said: “To be honest, I felt helpless towards the end. On many occasions I was extremely embarrassed about the way she was treated by the system. A lot of terrible things Alison went through were doctors projecting their own fears and inadequacies. How anyone could not think she had a major medical illness was beyond me”. Alison, he said, suffered “terrible physical distress compounded by insults and inhumanity” (www.ahmf.org).
In 1998, an ME/CFS sufferer wrote: “I’ve had ME for nearly five years, 18 months of which were a living hell. The physical suffering (inability to walk unaided, chew, swallow, breathe properly, hold my head up, hands which became spastic) was bad enough, but the brain symptoms were at times unbearable – my brain exploding with stimulus until I thought I’d gone mad (and) the room spun like I was drunk, making me feel physically sick. The bed felt like it was moving. I had explosions of light before my eyes. Worst of all were the ‘seizures’, which felt like I was having a stroke – pins and needles on my head and face, drooping muscles around my mouth, my head would start to tip backwards, absolutely terrifying. I live alone, yet have been refused home care, disability living allowance or any form of medical advice. The public need to be shocked by seeing the severely affected, those being tube fed, shaking, uncontrollable, paralysis, unable to hold up their head, speak, see, control bowel movements. The myth that ME is never fatal must be dismissed. I know of several people who have died of the complications ME can bring” (Perspectives, September 1998:26).
UK Coroners are now providing incontrovertible evidence that ME/CFS can lead to death. This is something that the ME/CFS community has known for many years. 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).
On 18th June 1995, Consultant Radiologist Dr Eric Booth died from ME/CFS aged 48 years, having had ME/CFS for 16 years. Four years before he died, Booth wrote: “I have been very seriously ill for the last five years, being totally bedridden (but) am unable to convey this to my medical colleagues. I have come to believe that physicians suffer from compassion fatigue” (BMJ 28 October 1995:311). The autopsy findings were disturbing but were suppressed; Booth’s next of kin was warned by the Official Solicitor that action would be taken against her if she divulged the post-mortem findings, to the extent that she was reduced to a state of chronic fear.
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).
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 (see below).
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).
The Wessely School, however, including the three PACE Trial Principal Investigators and the Director of the Clinical Trial Unit, continue to believe that ME/CFS is an “aberrant illness belief” and they assume that all patients – including those with ME/CFS -- suffering from what they deem to be “medically unexplained symptoms” (which they refer to as MUS) or from “medically unexplained physical symptoms” (which they refer to as MUPS) are really suffering from the same mental illness, ie. somatisation, and as such their symptoms will never be medically explained, therefore there is no point in wasting health service resources in seeking a biomedical explanation.
The Wessely School claim that they are reacting against Cartesian dualism – the long-held belief in Western medicine that an illness is either “organic” or “psychiatric”. However, as Dr Mary Schweitzer (a US ME/CFS sufferer and patient advocate) points out, the Wessely School has simply turned Cartesian dualism on its head. Disorders such as schizophrenia used to be regarded as “mental”, but advances in understanding now show that the psychiatric disturbances that present in schizophrenia are manifestations of underlying organic pathology. In their own interpretation, the Wessely School has reversed this in relation to ME/CFS, claiming that the physical is psychological which hardly accords with 21st century medicine