Shout about ME blog post, by Russell Logan, 14 May 2016: Suicide risk 5 times higher in ME/CFS:  Poor medical care, neglect are major factors

The risk of suicide among ME/CFS patients is a staggering five times higher than the general population, a new Spanish study has found.

Psychologist Juan Jimenez-Ortiz at the Spanish University of Valladolid, and author of the study, pointed to inadequate medical care as a major factor in his findings.

“… the incidence, amongst PWME, of risk of suicide which is 12.75%, compared to the incidence in the general Spanish population which is 2.3%.”

In Depression, hopelessness in people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Risk factors and protection Juan Jimenez-Ortiz also notes that the incidence of depression among patients with me/cfs is 57.25%, compared to that of only 4% in the general Spanish population.

The researcher surveyed 205 Spanish patients with ME/CFS, comprising 187 women and 18 men aged between 27 and 71 years.

A report on the study by Plataforma de Afectadas por los Recortes en Sanidad (PARS) said the findings were “worrisome”.

“The high level of risk of suicide, depression and hopelessness in these patients is much higher than in the rest of the Spanish population due to, mostly, the lack of relevant health care services,” said PARS.

“For several decades, PWME [people with ME] in Spain …live with a great number of social and political factors which, added to their illness, severely reduce their quality of life and put them at risk of suicide…

“These factors include, mainly, a lack of access to relevant medical care and a precarious economic situation due the lack of pensions and other help which people too sick to work are entitled to in Spain. Also the lack of proper care of this illness by the health administrations results in a general lack of social support for PWME.”

Patients let down by the health care system
Some of the reasons which have been found to be associated in a significant manner to depression, hopelessness and risk of suicide amongst PWME, include:

To risk of suicide:

• Not having medical care
• Having ME/CFS affect their capacity to earn a living and the worsening of the economic situation of their family unit
• Having to turn to family members for help with activities of daily life
• Not being listened to by doctors

To depression and hopelessness:

• Having been put down and not treated properly by the health care system
• Not having regular medical follow-up
• Having been sent for psychological or psychiatric treatment and been labelled as “rebellious patient”
• Having lost their job
• Having lost friendships due to the illness
• Not being believed when mentioning the effects on their health of chemical agents (chemical sensitivities)
• Having had their intimate (sexual) relationships affected by ME/CFS
• Having had ME/CFS affect their economic situation

UK report confirms high suicide risk
In 2005, in an article aimed at raising nurses’ awareness of ME, Greg Crowhurst of UK advocacy group The 25% Severe ME Group noted: “Disbelief, especially by GPs and family members, makes it difficult for patients to access services.”

Crowhurst cited a 2001 report by Action for ME (AfME), another UK me/cfs charity, which found that:

• 77 per cent of patients experienced severe pain; and more than 80 per cent had felt suicidal as a result of the illness
• 70 per cent were either never able, or sometimes too unwell, to attend a doctor’s clinic
• 65 per cent received no advice from the GP on managing the illness
• 80 per cent of those who were bedridden with ME reported that a request for a home visit by a doctor had been refused
• Many people do not receive the state benefits to which they are entitled

AFME SURVEY RESULTS
>SUICIDAL FEELINGS 80%
>SEVERE PAIN 77%
>TOO ILL TO VISIT A GP 70%
>RECEIVED NO GP ADVICE 65%
>REFUSED HOME VISIT BY GP 80%

Average age of suicide is much lower among CFS patients
A study by Leonard Jason found that the average age of death by suicide among CFS patients is 39, compared to the US national average of 48. The full text of the study is available here.

Jason analyzed a memorial list tabulated by the National CFIDS Foundation of 166 deceased individuals who had had CFS.

The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths.

Jason also found that while the median age of death from cancer in the US population is 72, for CFS patients, it’s 48. Also, the average age at death from heart failure is 83, compared to 59 in CFS patients who die of heart failure.

Russell Logan
Russell Logan worked as a magazine publisher and editor until forced into early retirement through ill health with ME. He has battled with moderate to severe ME for 25 years. He now lives in Noosaville, Australia.