Causes of death

Causes of Death in ME/CFS
1 All causes, 2 Top 3 causes of death, 3 Suicide,
4 Cardiovascular Problems, 5 Cancer
Source: Fatigue. 2016; 4(4): 195–207

Statistics on the causes of death of myalgic encephalomyalitis (ME) and/or chronic fatigue syndrome (CFS) patients vary greatly. Some factors that influence statistics on cause of death include case definitions, regional differences, access to medical resources, and the presence of comorbid illnesses.

Age of deaths due to ME/CFS

In England and Wales, most people whose deaths were caused fully or partly by ME/CFS were of working age, with the youngest dying their late teens.

Deaths caused partly or fully by ME/CFS, England and Wales, 2001 - 2016.
Source: Office of National Statistics.

Deaths caused partly or fully by ME/CFS, England and Wales, 2001 - 2016.
Source: Office of National Statistics.

Deaths from ME/CFS are very rare, and ME/CFS is rarely recorded on death certificates. In England and Wales, between 2001 and 2016, 88 death certificates stated that the death was either partly or fully caused by myalgic encephalomyelitis/chronic fatigue syndrome, which is less than six deaths per year.

Life expectancy

Life expectancy studies in ME/CFS have generally shown lowered life expectancy, with a higher all-cause mortality found by McManimen et al. (2016). Analysis from an online memorial showing over half of ME/CFS patients died of heart failure, suicide or cancer, with ages of death from both suicide and cancer being considered earlier than in the general population. A study of elderly ME/CFS patients with cancer by

Chang et al. (2012) found Non-Hodgkin Lymphoma (NHL) found rates were significantly higher in ME/CFS patients than the general US population, especially diffuse large B cell lymphoma.

Notable studies

• 2016, Mortality in patients with myalgic encephalomyelitis and chronic fatigue syndrome - (Full Text)
• 2016, Mortality of people with chronic fatigue syndrome: a retrospective cohort study in England and Wales from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive Search (CRIS) Register - (Full text)

Criticism by James Coyne: Bad stats, non sequitur conclusions in Lancet chronic fatigue syndrome/suicide study.

• 2015, Pathology of Chronic Fatigue Syndrome: Pilot Study of Four Autopsy Cases - (Full text)
• 2012, Chronic Fatigue Syndrome and subsequent risk of cancer among elderly US adults - (Full text)
• 2010, Exploring the feasibility of establishing a disease-specific post-mortem tissue bank in the UK: a case study in ME/CFS - (Full text)
• 2009, Coenzyme Q10 deficiency in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is related to fatigue, autonomic and neurocognitive symptoms and is another risk factor explaining the early mortality in ME/CFS due to cardiovascular disorder - (Abstract)
• 2006, Causes of death among patients with chronic fatigue syndrome - (Full text)
• 2006, Mortality in a cohort of chronically fatigued patients - (Abstract)

Learn more

• 2012, Update on the ME/CFS Tissue and Post Mortem Tissue Bank (ME Association)
• 2016, Mortality in ME/CFS (ME Research UK)
• 2016, Chronic Fatigue and Suicide: An Alarming Trend

See also

• Severe and very severe ME
• List of deaths caused by myalgic encephalomyelitis or chronic fatigue syndrome
• Suicide
• Medical neglect and abuse

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

coenzyme Q10 (CoQ10) - Coenzyme Q10 (also known as ubiquinone) is found in the mitochondria and, as a component of the electron transport chain, plays an important role in aerobic respiration. The chemically-reduced form of CoQ10 is called ubiquinol.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.