Guest Blog by Dylan Murphy
Leonard Jason is a professor of psychology and Director of the Centre for Community Research at DePaul University in America. He has a long history of research in the field of ME/CFS.
Madeline Johnson is co-author of several research studies into ME/CFS and is a research assistant to Leonard Jason. Later this year she will be starting her PhD studies in chronic illness amongst paediatric populations.
Research: Risk factors for suicide in chronic fatigue syndrome, published online 12 June 2020, Death Studies.
1. How did you get involved in the field of ME/CFS research?
MJ: In 2018 I graduated from the University of Illinois at Urbana-Champaign with a degree in psychology. Having developed an interest in the intersection between medicine and psychology, and with a plan in mind to later attend graduate school in clinical psychology, I sought a research assistant position here at the Center.
Having had little background knowledge about ME/CFS, I quickly learned much about the patient community, and my passion for researching this vulnerable population took hold. This Fall I will be starting the clinical doctoral program UW-Milwaukee, where I will study paediatric populations coping with chronic illness much like ME/CFS.
LJ: In the early 1990s, having read about the low rates of CFS, which is what it was called at the time, Judith Richman and I decided to work on a community-based epidemiology study to see what the real rates might be. That is how I started in research.
Several studies indicate that people with ME/CFS are at a higher risk of suicide than the general population. In 2020 you co-authored a study on the risk factors of suicide amongst people with ME/CFS.
2. In this study you suggested that several social and cultural factors may place individuals with ME/CFS at a higher risk than the general population and noted that the label ‘Chronic Fatigue Syndrome’ may be a contributing factor. Can you explain this issue in a bit more detail?
LJ/MJ: Historically, the label chronic fatigue syndrome (CFS) has been stigmatized to a greater degree due to the fact that it only highlights the single symptom of fatigue.
In reality, this illness is incredibly complex, and patients often display a wide variety of symptoms that may or may not fluctuate over time. In highlighting the single symptom of fatigue, it downplays the severity of the illness, and sometimes portrays that the patient is lazy, or that it is “all in their head.”
Additionally, when fatigue is highlighted, common methods of treating other fatiguing illnesses are brought into play, such as graded-exercise therapy, which are actually harmful to patients with ME/CFS.
Additionally, one study conducted at our Center revealed that medical practitioners were more likely to associate psychological causes to an illness if the term CFS was presented, and biomedical causes if the term myalgic encephalomyelitis (ME) was presented (Jason et al., 2001).
Aside from the overly simplistic nature of the CFS label, ME tends to sound much more physiological. This is problematic when our culture tends to take medical illnesses more seriously than those that appear to be psychological in nature (whether they are or not).
People with ME/CFS experience high levels of functional impairment across physical and mental domains, scoring lower overall on health-related quality-of-life tests than many other chronic health conditions. In your study you note the 2007 paper by Joiner, Why people die from suicide, which identified three factors necessary for a lethal suicide attempt.
3. Can you explain how these three factors led you to the conclusion that people with ME/CFS, who experience moderate decreases in functionality, may be more likely to attempt suicide than those who are severely or mildly affected?
LJ/MJ:
Joiner describes three factors necessary for a lethal suicide attempt:
- thwarted social and medical supports,
- perceived burdensomeness, and
- capability to engage in suicidal behavior.
In our paper, we discuss three levels of functionality. It is likely that all three groups experience varying degrees of the first two factors, although based on the descriptions of each level of functionality, it is probable that the most severe group does not have the physical capabilities to successfully engage in a suicide attempt.
Individuals in the most severe group are often bedbound, and unable to carry out most tasks of daily living without assistance. While they may experience Joiner’s first two factors to the greatest degree, if they are physically unable to tend to daily self-care, they are likely not physically able to carry out a suicide attempt.
In contrast, the most functional of the three groups, while still dealing with varying degrees of all factors, may experience more social connections, can work small amounts, or take care of themselves to some degree even if limited. These are all protective factors that may prevent or lessen suicidal ideation.
We predicted the middle-most – the moderate – functioning group is at greatest likelihood for suicide due to the fact that they are impaired to the degree that many of the protective factors present in the first group are not, yet it is likely they possess enough energy to physically harm themselves.
4. In your study, physiological issues – particularly pain – were identified as possible factors in the decision to die. How significant are these physiological issues?
LJ/MJ: Many individuals who experience chronic pain, regardless of diagnosis, do not commit suicide as a result of depression, but rather as a way to escape the pain that they experience when other options have been exhausted (Devendorf et al., 2018).
In the general population, individuals who experience chronic pain are twice as likely to commit suicide (Fishbain, 1999). For individuals with ME/CFS, pain is a symptom that is commonly reported, often in the form of muscle pain, joint pain, and headaches (Jason et al., 1999).
It is highly likely that physiological issues, especially those other than pain, are contributing factors for suicide in an illness that is largely systemic.
Another risk factor you identified is the absence of diagnosed comorbidities. This might seem counter intuitive as you could expect someone with several long-term chronic medical conditions to be at a much higher risk of suicide.
5. How might an absence of diagnosed comorbidities be a risk factor for suicide in ME/CFS?
LJ/MJ: While the presence of comorbidities typically exacerbates one’s risk for suicide, we did not find that to be the case in our study.
This may be for several reasons, although one explanation is that having comorbid diagnoses alongside ME/CFS may propagate access to better healthcare (i.e., treatment of symptoms is easier due to taking other illnesses more seriously).
Often in healthcare, having a solidified illness label or diagnosis helps to facilitate treatment. For an illness that is often shrugged off as psychological in nature, having a comorbid illness that is taken seriously may allow for doctors to attend to the physiological symptoms.
Additionally, because ME/CFS is a highly stigmatized and often poorly understood illness, we believe having a comorbid diagnosis may act as a buffer of sorts for those experiencing judgment.
For example, if a patient is unable to work on certain days or visit with friends due to their ME/CFS symptoms, being able to use their comorbid diagnosis as an explanation for their decreased functionality may lessen any judgment from co-workers and peers alike.
NICE in the UK have recently conducted a public consultation on its draft ME guidelines. These are due to be published on 18 August. I couldn’t find anything in the draft guideline, which dealt with mitigating the risk factors for suicide amongst people with ME/CFS.
6. What can/should public health authorities do to help reduce the risk factors for suicide amongst people with ME/CFS?
LJ/MJ: One of the chief complaints of patients with ME/CFS is that they do not feel understood or supported. This is especially true of their interactions with healthcare professionals.
Physicians who are treating patients with ME/CFS should work with them long-term so that they feel supported, and they should stay current on active research projects.
Another way they can assist is in referring their patients to various social support networks. Many patients with ME/CFS find comfort in forming connections with other patients struggling with this illness, yet many others are unaware of these resources.
There are many social support groups (often through social media, patient advocacy organizations, or blog sites), that allow individuals within the patient community to share in their experiences and create friendships with people who understand what they are going through.
Having these resources as a way to connect and gather information will serve as a protective factor for patients learning to cope with the implications of their illness.
7. There few studies into the risk factors for suicide in ME/CFS What further research is needed to help us better understand this important issue?
LJ/MJ: We believe many risk factors for suicide within this population can be eliminated with a better understanding of the unique struggles that these patients endure.
One way that this can be improved is to conduct more large-scale studies of both parents and children that include all genders, race/ethnicities, and a range of socioeconomic status.
It is also beneficial to look at the trajectory of ME/CFS in the long-term, as far too many studies evaluate the illness at a single time point, when the reality for many patients is that their symptoms fluctuate.
Additionally, future research should investigate the role of medical communication in the diagnostic process, and how it may affect illness outcomes. This could involve how physicians explain and portray an illness diagnosis, how they communicate with other healthcare professionals responsible for the care of a single patient, and/or how patients receive support from peers and professionals (e.g., in the school environment, workplace, or with friends and family).
- Research: Risk factors for suicide in chronic fatigue syndrome, published online 12 June 2020, Death Studies.