A Conversation with Professor Leonard Jason and Madeline Johnson
By Bronc
Dr. Leonard A. Jason is a professor of psychology and Director of the Center for Community Research at DePaul University in Chicago, USA. He has a long history of research in the field of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). His most recent books include: The Psychology of Peace Promotion and Introduction to Community Psychology: Becoming an Agent of Change.
Madeline Johnson is a co-author of several research studies into ME/CFS and is a research assistant at the Center for Community Research at DePaul University in Chicago, Illinois, USA. Later this year she will be starting her PhD studies in chronic illness amongst pediatric populations.
Phoenix Rising:
How did you get involved in the field of ME/CFS research?
Madeline Johnson:
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 at University of Wisconsin at Milwaukee, where I will study pediatric populations coping with chronic illness much like ME/CFS.
Dr. Leonard Jason:
In the early 1990s, having read about the low rates of Chronic Fatigue Syndrome (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.
Phoenix Rising:
Several studies point to the fact that people with ME/CFS are at a higher risk of suicide than the general population. A 2016 study published in the Lancet suggested that there was a seven-fold increased risk of suicide amongst people with ME/CFS. Unfortunately, there is a dire lack of studies that examine the risk factors for suicide amongst people with ME/CFS.
In 2020 you authored a study on the risk factors of suicide amongst people with ME/CFS. In this investigation you suggested that several social and cultural factors may place individuals with ME/CFS at a higher risk for suicide than the general population. You highlight the twin issues of unsupportive peer and medical interactions.
There is plenty of anecdotal evidence that many patients suffer from a social stigma whereby family/friends and health professionals fail to support them and don’t believe in the severity of their illness.
This is, of course, partly related to the medical establishment’s portrayal of ME/CFS as a psycho-social illness for many years — a claim that has been amplified by articles in the mainstream media.
In your study you note that the illness label “CFS” may increase the risk for suicide. Can you explain this issue in a bit more detail?
Center for Community Research:
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).
Phoenix Rising:
Numerous studies and a wide range of anecdotal evidence from people with ME/CFS illustrate the debilitating nature of the illness, which can have a very limiting effect upon everyday life.
People with ME/CFS experience high levels of functional impairment across physical and cognitive domains, scoring lower overall on health-related quality-of-life tests than many other chronic health conditions.
Meanwhile, a 2019 Action for ME survey identified that more than three-quarters (77%) of people with ME/CFS said they are unable to work because of the impact of ME/CFS, 88% said they had stopped or reduced household tasks and 94% said that they had stopped or reduced social contact. All of which points to the huge impact that ME/CFS has on people’s quality of life.
In your study you mention the 2007 book by Joiner “Why people die from suicide” which identified three factors necessary for a lethal suicide attempt.
Can you explain how these three factors led you to the conclusion that patients who experience moderate decreases in functionality may be more likely to attempt suicide than those with severe ME/CFS or those with mild symptoms?
Center for Community Research:
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 probably 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 bed-bound, 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 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 there. Yet it is likely they possess enough energy to physically harm themselves.
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 pain that they experience when other options have been exhausted.
-Leonard Jason & Madeline Johnson
Phoenix Rising:
In your study you identify physiological issues, particularly pain, as a possible factor in the decision to die of suicide. How significant are physiological issues as a risk factor for suicide in people with ME/CFS?
Center for Community Research:
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 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 endorsed, often in the form of muscle pain, joint pain, and headaches (Jason et al., 1999).
It is highly likely that physiological issues, especially other than pain, are contributing factors for suicide in an illness that is largely systemic.
Phoenix Rising:
Another risk factor for suicide in people with ME/CFS identified in your study is the absence of diagnosed comorbidities. At first reading, this might seem counter-intuitive as one might expect someone with several long-term chronic medical conditions to be at a much higher risk of suicide.
How might an absence of diagnosed comorbidities be a risk factor for suicide?
Center for Community Research:
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).
Oftentimes 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 their 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 coworkers and peers alike.
Phoenix Rising:
The National Institute for Health and Care Excellence (NICE), in the UK, have recently conducted a public consultation on its draft ME/CFS guidelines. These are due to be published in the autumn of 2021.
There appears to be nothing in the draft guidelines which deals with mitigating the risk factors for suicide amongst people with ME/CFS. Sadly, specialist services for people with ME/CFS are sparse and in dire need of greater investment in the UK.
What can/should public health authorities do to help reduce the risk factors for suicide amongst people with ME/CFS?
Center for Community Research:
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 together with them long-term so that they feel supported, as well as stay current on active research projects involving the ME/CFS population.
Another way they can assist is by 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.
Phoenix Rising:
There are few studies into the risk factors for suicide amongst those with ME/CFS. What further research is needed to help us better understand this important issue?
Center for Community Research:
I 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 may involve how physicians may better explain and portray an illness diagnosis, how they may communicate with other healthcare professionals responsible for the care of a single patient, or how patients may best receive support from peers and professionals (e.g., in the school environment, workplace, or with friends and family).
Learn more
The study described is: Risk factors for suicide in chronic fatigue syndrome, by Madeline L. Johnson, Joseph Cotler, Julia M. Terman & Leonard A. Jason. Published online 12 June 2020, in the journal Death Studies.
Read about a previous study by Leonard Jason on a similar topic: Overcoming this is going to be difficult: Suicide risk, stigma, and chronic fatigue syndrome
Read about the reality of suicide in Long Covid: COVID long-haulers are killing themselves as symptoms become too painful to bear — but support groups offer relief
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Bronc is a former historian who is active in his local ME support group. He enjoys interviewing scientists involved in ME research to help himself and others better understand their illness.