Statistics about suicide among patients with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) remain widely disparate, possibly because of regional differences in suicide rates in general, as well as the use of different case definitions between epidemiological studies. Some case definitions may capture someone with a depressive disorder instead of ME/CFS and some may exclude a ME/CFS patient because they have a secondary psychiatric disorder. Other factors to consider are the regional and personal support systems available, the stigma of suicide which may mask the official cause of death, and whether chronic pain is a presenting symptom. Regardless, one question is much discussed among researchers, clinicians, and patients: that the incidence of suicide appears higher in patients with ME and CFS than that of the general population.
Causes[edit | edit source]
The reasons cited for suicide risk in the ME and CFS populations are similar to those in other chronic illness populations: poor quality of life coupled with hopelessness for relief; loss of employment, finances, and/or relationships; chronic pain; secondary depression; and comorbid mental illness and/or physical illnesses. In a qualitative study of patients with ME/CFS with suicidal ideation, Devendorf et al. (2018) found the following contributing factors to suicide in non-depressed people with chronic illness:
- having or lacking resources (79%)
- social interactions with a lack of understanding (72%)
- systemic healthcare issues related to treatment of ME/CFS (66%)
- losing a sense of self due to ME/CFS (59%)
- illness-induced distress (48%)
- and other factors
Stigma[edit | edit source]
The stigma of living with a poorly understood chronic ilness may also be a factor. Stigma can reduce social support and increase isolation, which are both factors linked to an increased suicide risk.
Regional studies[edit | edit source]
United States[edit | edit source]
A 2016 study by the Center for Community Research, DePaul University, compared the mortality in patients with myalgic encephalomyelitis and chronic fatigue syndrome to the mortality rates of the general population in the United States. Four categories for death were examined in detail: all causes combined, suicide, cardiovascular-related and cancer. In this study sample of 56 patients, the most frequent cause of death, as reported by caregivers, was suicide, occurring among 26.8% of patients. When examining suicide rates they found the suicide rate was higher in male ME/CFS patients than females (53.33% male and 46.67% female), which was the only cause of death in this study to display this pattern. Although the mean age of death in individuals with ME and CFS is at a younger age compared to the overall population, only the rate of all causes combined and cardiovascular-related mortality reached statistical significance.
United Kingdom[edit | edit source]
A 2016 study by Roberts, et al. examined the mortality rates via electronic clinical records of 2147 people with chronic fatigue syndrome (as per the Oxford case definition) over a seven year period who presented to a specialist clinic that serves London and the south of England.
- The researchers found no significant statistical difference in mortality rate for all-cause mortality or cancer-specific mortality in patients with chronic fatigue syndrome compared with the general population in England and Wales when matched for age and gender. The one category for which a significant increase existed was in suicide-specific mortality. The researchers also, found an increased risk of completed suicide in patients with chronic fatigue syndrome when compared with a population control. In total, five people died from suicide during the 7-year period. Kapur and Webb, from the Centre for Suicide Prevention at the University of Manchester, UK commented on the study: "Based on the suicide rate in the general population of England and Wales, the expected number would have been less than one death by suicide. In other words, suicide risk was increased almost seven-fold."
Because of the statistic analysis used, this study is criticized by Dr. James Coyne, an ardent critic of the statistical analysis of the PACE trial. Please note that several of the researchers who authored this study, authored the PACE trial study.
Spain[edit | edit source]
A 2015 doctoral thesis from Spain found an increased risk of suicidal ideation in ME/CFS patients, 12.74% compared to 2.3% in the general Spanish population. This study is believed to be the first that pointed to external factors, such as inadequate medical treatment and loss of job and relationships, instead of depression as the reason for suicidal ideation.
Lost to suicide[edit | edit source]
Some of the people with ME/CFS known have died by suicide are:
- Robert Courtney, a citizen scientist who frequently commented on research including the PACE trial and the Cochrane review of exercise therapy for CFS
- Lynn Gilderdale, whose mother Kay was prosecuted for assisting Lynn's suicide
- Anne Örtegren, a well-known Swedish ME activist and fundraiser
Quotes[edit | edit source]
- 2016 - "Ultimately the best way to prevent suicide in ME/CFS will be to find effective disease-modifying treatments or cures for it," by Dr. Lily Chu
Notable studies[edit | edit source]
- 2014, Negotiating the maze: risk factors for suicidal behavior in chronic pain patients - (Abstract)
- 2016, Mortality in patients with myalgic encephalomyelitis and chronic fatigue syndrome - (Abstract)
- 2016, Suicide risk in people with 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)
- 2017, Invisible Illness Increases Risk of Suicidal Ideation: The Role of Social Workers in Preventing Suicide - (Full text)
- 2018, The Importance of Screening for Suicide Risk in Chronic Invisible Illness - (Full Text)
- 2018, Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness - (Abstract)
- 2018, Outpatient Engagement Lowers Predicted Risk of Suicide Attempts in Fibromyalgia - (Full text)
- 2021, Association between chronic fatigue syndrome and suicidality among survivors of Middle East respiratory syndrome over a 2-year follow-up period - (Full text)
- 2021, Identifying and Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - (Full text)
See also[edit | edit source]
- Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome
- Causes of death
- Medical neglect and abuse
- Stigma and discrimination
- Ethical issues
- Mental health
Learn more[edit | edit source]
- 2011, Suicide in ME/CFS and Fibromyalgia, by Cort Johnson in Phoenix Rising
- 2016, Bad stats, non sequitur conclusions in Lancet chronic fatigue syndrome/suicide study by Dr. James C. Coyne
- 2016, Suicide and ME/CFS, by Lily Chu, MD, MSHS for the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
- 2016, New Paper Cites Increased Risk of Suicide in CFS, by Leigh Reynolds in Bateman Horne Center newsletter
References[edit | edit source]
- Schwartz-Lifshitz, Maya; Zalsman, Gil; Giner, Lucas; Oquendo, Maria A. (December 2012). "Can We Really Prevent Suicide?". Current Psychiatry Reports. 14 (6): 624–633. doi:10.1007/s11920-012-0318-3. ISSN 1523-3812. PMC 3492539. PMID 22996297.
- Hassett, Afton L.; Aquino, Jordan K.; Ilgen, Mark A. (August 2014). "The Risk of Suicide Mortality in Chronic Pain Patients". Current Pain and Headache Reports. 18 (8): 436. doi:10.1007/s11916-014-0436-1. ISSN 1531-3433.
- Newton-John, TR (2014). "Negotiating the maze: risk factors for suicidal behavior in chronic pain patients". Current Pain & Headache Reports. 18 (9): 447. doi:10.1007/s11916-014-0447-y. PMID 25091131.
- Chu, Lily (May 2016). "Suicide and ME/CFS". IAME/CFS Newsletter. 9 (1).
- Pederson, Cathy L.; Gorman-Ezell, Kathleen; Hochstetler-Mayer, Greta (August 1, 2017). "Invisible Illness Increases Risk of Suicidal Ideation: The Role of Social Workers in Preventing Suicide". Health & Social Work. 42 (3): 183–186. doi:10.1093/hsw/hlx029. ISSN 0360-7283.
- Devendorf, AR; McManimen, SL; Jason, LA (2018). "Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness". Journal of Health Psychology. doi:10.1177/1359105318785450.
- McManimen, Stephanie L.; Devendorf, Andrew R.; Brown, Abigail A.; Moore, Billie C.; Moore, James H.; Jason, Leonard A. (2016). "Mortality in patients with myalgic encephalomyelitis and chronic fatigue syndrome". Fatigue: Biomedicine, Health & Behavior. 4 (4): 195-207. doi:10.1080/21641846.2016.1236588.
- Roberts, Emmert; Wessely, Simon; Chalder, Trudie; Chang, Chin-Kuo; Hotopf, Matthew (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". The Lancet. 387 (10028): 1638 - 1643. doi:10.1016/S0140-6736(15)01223-4. PMID 26873808.
- Kapur, Nav; Webb, Roger (April 2016). "Suicide risk in people with chronic fatigue syndrome". The Lancet. 387 (10028): 1596–1597. doi:10.1016/s0140-6736(16)00270-1. ISSN 0140-6736.
- Coyne, James C. (February 16, 2016). "Bad stats, non sequitur conclusions in Lancet chronic fatigue syndrome/suicide study by Dr. James Coyne".
- Jiménez-Ortiz, JJ (2015), "Depresión y desesperanza en personas enfermas de Encefalomielitis Miálgica/ Síndrome de Fatiga Crónica: Factores de riesgo y de protection" [Risk of Suicide due to Neglect Amongst PWME] (PDF), Plataforma de Afectadas por los Recortes Sanitarios - La PARS (in español), Universidad de Valladolid, retrieved July 27, 2020, lay summary
- "A Tribute To 'Bob' – Robert Courtney, ME Activist, Fundraiser, Researcher, And Friend". March 19, 2018.
- "Mother cleared in ME death trial". 2010. Retrieved August 16, 2018.
- Gilderdale, Kay (April 14, 2011). One Last Goodbye: Sometimes only a mother's love can help end the pain. Ebury Press. ISBN 9780091939144.
- "Farewell: A Last Post from Anne Örtegren". Health Rising. January 10, 2018.
- Pederson, Cathy L. (2018), "The Importance of Screening for Suicide Risk in Chronic Invisible Illness" (PDF), J Health Sci Educ, 2 (4): 1-5
- McKernan, Lindsey C; Lenert, Matthew C; Crofford, Leslie J; Walsh, Colin G (September 7, 2018). "Outpatient Engagement Lowers Predicted Risk of Suicide Attempts in Fibromyalgia". Arthritis Care & Research. doi:10.1002/acr.23748. ISSN 2151-464X.
- Ahn, So-Hyun; Kim, Jeong Lan; Kim, Jang Rae; Lee, So Hee; Yim, Hyeon Woo; Jeong, Hyunsuk; Chae, Jeong-Ho; Park, Hye Yoon; Lee, Jung Jae (May 2021). "Association between chronic fatigue syndrome and suicidality among survivors of Middle East respiratory syndrome over a 2-year follow-up period". Journal of Psychiatric Research. 137: 1–6. doi:10.1016/j.jpsychires.2021.02.029. PMC 7888998. PMID 33631632.
- Chu, Lily; Elliott, Meghan; Stein, Eleanor; Jason, Leonard A. (May 25, 2021). "Identifying and Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Healthcare. 9 (6): 629. doi:10.3390/healthcare9060629. ISSN 2227-9032. PMC 8227525. PMID 34070367.
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.
PwME Acronym for a "Person with ME" (myalgic encephalomyelitis).