In 2006, the journal Health Care for Women International published an analysis of a memorial list by Prof Lenny Jason and colleagues at the University of Chicago. The list, tabulated by the National CFIDS Foundation, contained information on 166 deceased individuals reported to have a diagnosis of CFS and whose list data had been supplied by relatives and friends. The four most prevalent causes of death were heart failure (20% of the total sample), suicide (20%), cancer (19%), and complications of CFS (11%). The average age at death was 47.8 years in those who died from cancer (significantly younger than the mean age of death for cancer in the USA, 72 years), and 39.3 years for those who had committed suicide.
As Prof Jason pointed out, it is impossible to generalise from the data on the memorial list to the overall population of patients with ME/CFS. The various methodological limitations – the “self-report” nature of the data from patients’ relatives, the absence of independent confirmation of cause of death, and the incompleteness of the information itself (e.g. what type of cancer or heart disease) – all conspire to limit the scientific conclusions that can be drawn. Nevertheless, the tabulated information has value, and highlights the tragic consequences of ME/CFS for some patients. We already know that the prognosis is poor for many people with the illness – one review in 2004 concluded that, “patients exhibit severe, long-term functional impairment…Substantial improvement is uncommon and is less than 6%” – and it is well-recognised that the presence of long-term illness impacts significantly on life expectancy.