Identifying and Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract

Adult patients affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are at an increased risk of death by suicide. Based on the scientific literature and our clinical/research experiences, we identify risk and protective factors and provide a guide to assessing and managing suicidality in an outpatient medical setting. A clinical case is used to illustrate how information from this article can be applied. Characteristics of ME/CFS that make addressing suicidality challenging include absence of any disease-modifying treatments, severe functional limitations, and symptoms which limit therapies. Decades-long misattribution of ME/CFS to physical deconditioning or psychiatric disorders have resulted in undereducated healthcare professionals, public stigma, and unsupportive social interactions. Consequently, some patients may be reluctant to engage with mental health care. Outpatient medical professionals play a vital role in mitigating these effects. By combining evidence-based interventions aimed at all suicidal patients with those adapted to individual patients’ circumstances, suffering and suicidality can be alleviated in ME/CFS. Increased access to newer virtual or asynchronous modalities of psychiatric/psychological care, especially for severely ill patients, may be a silver lining of the COVID-19 pandemic.

Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care

“…This, together with the devastating symptom burden and lack of capacity, paint a picture of patient isolation and suffering that is hard to imagine. Several descriptions, some autobiographical, exist to support this, and also support the extensive intolerance for light and sound found in the present study [ 11 , 13 , 14 , 15 , 16 , 17 , 18 , 19 ]. The three most incapacitating symptoms described by the patients in the present study in order of severity were fatigue, pain, and cognitive symptoms.…”

"I feel like my body is broken": exploring the experiences of people living with long COVID

“…Looking ahead, exploring if and how individuals adapt to their post-illness body will be necessary. For example, post-exertional malaise can greatly limit the ability to engage in activities that could otherwise help prevent low mood and feelings of isolation [ 41 ]. When combined with severe functional limitations and the burden of educating others, there can be serious adverse impacts on mental health [ 41 , 42 ].…”

“…For example, post-exertional malaise can greatly limit the ability to engage in activities that could otherwise help prevent low mood and feelings of isolation [ 41 ]. When combined with severe functional limitations and the burden of educating others, there can be serious adverse impacts on mental health [ 41 , 42 ]. A deeper exploration of common symptoms, including post-exertional malaise, and their physical and psychological consequences, could disentangle the effects of long COVID from the secondary impacts on mental health—ultimately informing interventions and supportive care strategies.…”

Chronic fatigue syndrome: An old public health issue highlighted by the COVID‐19 pandemic

“…Owing to this, CFS/ME often gets delegitimized as “not a real physiological condition” and patients often face stigma from their peers and healthcare professionals alike 25 . This further deteriorates the quality of life for people with CFS/ME, who are already experiencing trauma, grief and loss due to their severe symptoms, and could lead to the development of depression and a heightened risk of suicide 26,27 . Many patients, clinicians and experts associate the persistent stigmatization of the disease with the name ‘chronic fatigue syndrome’ and suggest that it should be referred to as ‘myalgic encephalomyelitis’ to underline the neuroimmunological character of the disease.…”