CHRONIC ILLNESS ANNOTATED BIBLIOGRAPHY UPDATED

by Shane George

During the summer, I joined Patricia Fennell and Sara Rieder Bennett to update the Chronic Illness annotated bibliography at Oxford Bibliographies Online, a subscription-based bibliography database
 with articles on various topics published through Oxford University Press. Several novel discussions of chronic illness came out of this experience, and provided perspectives from which the experience of chronic illness could be understood in social work. The bibliography presents the nuances of chronic illness within various relevant contexts.

Among our inclusion of many newer editions of formerly cited works, several sections and subsections in the annotated bibliography were either removed, added, or revised to accurately reflect the current sociopolitical climate. For instance, the COVID-19 pandemic has birthed the persistent, long-form post-viral condition termed “Long Covid.” The condition’s similarities to other post-viral conditions has necessitated a new classification to describe them. Dr. Ken Friedman and colleagues (1) have termed this “Post Active Phase of Infection Syndrome,” or PAPIS. PAPIS as a classification may aid in shifting perspective on post-viral conditions, aiding in the search for shared treatment models as well.

In this vein, several updates involved caregiving and models of treatment/care. In addition to the importance of multidisciplinary treatment teams for chronic illnesses in medical care, treatments can also include occupational care. Functional medicine is increasingly appearing as a model of care that offers more patient-oriented treatment experiences. Meanwhile, psychological and behavioral methods have involved managing the various affective, behavioral, and cognitive challenges of experiencing a chronic illness. Division 12 of the American Psychological Association (2) describes behavioral therapy, cognitive behavioral therapy, multi-component cognitive behavioral therapy, and acceptance and commitment therapy as treatments for chronic conditions with greatest empirical support. Social work models assist patients manage their chronic illnesses by providing care in interventions, advocacy for health services, as well as through exploring various systems that define chronic illness treatment. Finally, new multidisciplinary perspectives posit the importance of integrated treatments. The Louis Armstrong Department of Music Therapy (3) of Mount Sinai Continuum Health Partners, for instance, involves music therapy in their provision of clinical care for chronic illnesses.

The greatest changes and updates occurred within the newly termed “Evolving Issues” section. Resources that discussed genetics and virology of chronic illness focused on the use of genetics research in aiding public health efforts. The use of mRNA vaccines in protecting against COVID-19 infections is a pertinent example of this, as discussed by Dr. Giuseppe Novelli and colleagues. (4) The formerly titled “Culturally Congruent Approaches” subsection became “Intersectional Approaches” so as to highlight the role of intersecting social identities in the experience of chronic illness. This subsection included a resource (5) on transgender and gender nonconforming identities as they relate to health.

Social unrest and war in the current world motivated another transition from veteran's health toward an inclusion of all people impacted by war. For instance, the World Health Organization (6) reports health concerns among refugees and migrants as a key point of action. Factors such as climate change are also discussed as they become more relevant. The final point of discussion included as an evolving issue is technology as it is used in communicating information, as well as its use at the assessment and treatment stages of interventions.

References

1. Kenneth J. Friedman, Modra Murovska, Derek F. H. Pheby, and Paweł Zalewski. 2021. Our evolving understanding of ME/CFS. Medicina 57:200.
2. Psychological Diagnoses and Other Targets of Treatment Chronic or Persistent Pain
3. Louis Armstrong Department of Music Therapy
4. Novelli, Giuseppe, Michela Biancolella, Tury, Mehrian-Shai, Vito Luigi Colona, Anderson F. Brito, Nathan D. Grubaugh, Vasilis Vasiliou, Lucio Luzzatto, and Juergen K.V. Reichardt. 2021. COVID-19 one year into the pandemic: From genetics and genomics to therapy, vaccination, and policy. Human Genomics 15: 1-13.
5. Current Research Trends in Transgender Health
6. World Report on the Health of Refugees and Migrants: Summary

Elements of Suffering in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

Selected as an Editor’s Choice Article >

The MDPI publication, Healthcare, spotlights, "Elements of Suffering in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected," by authors Patricia Fennell, Nancy Dorr and Shane George. Healthcare is an international, peer-reviewed, open access journal (free for readers), which publishes original theoretical and empirical work in interdisciplinary medicine and health care research.

"Few people understand what it is like to live with ME/CFS. Trying to explain it to others can be exhausting and frustrating. I just found your wonderful article on ME/CFS in Healthcare which describes the physical, the psychological, and the social effects of this illness with compassion and clarity. It’s exactly what so many people, especially providers, need to hear. I will be recommending it widely."

—Lynn Fuentes, JD, PhD

MDPI Healthcare Article Abstract:

People who are severely and very severely affected by Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) experience profound suffering. This suffering comes from the myriad of losses these patients experience, the grief that comes from these losses, the ongoing stigma that is often experienced as a person with a poorly understood, controversial chronic illness, and the trauma that can result from how other people and the health care community respond to this illness. This review article examines the suffering of patients with ME/CFS through the lens of the Fennell Four-Phase Model of chronic illness. Using a systems approach, this phase framework illustrates the effects of suffering on the patient and can be utilized to help the clinician, patient, family, and caregivers understand and respond to the patient’s experiences. We highlight the constructs of severity, uncertainty, ambiguity, and chronicity and their role in the suffering endured by patients with ME/CFS. A composite case example is used to illustrate the lives of severely and very severely affected patients. Recommendations for health care providers treating patients with ME/CFS are given and underscore the importance of providers understanding the intense suffering that the severely and very severely affected patients experience.

ME/CFS and the Fennell Four Phase Model:

Fennell’s Four-Phase Model is useful for defining and describing four phases that occur in ME/CFS. This model has been thoroughly developed over the last several decades through clinical encounters, patient testimonies, and empirical research. The model explicitly captures the changing experience of patients over time in all domains of their lives — their physical, psychological, and social-interactive worlds. 

The full text of our Healthcare article contains a section describing the course of ME/CFS using the Four-Phase Model to help illustrate how patients present in the physical-behavioral, the psychological, and the social-interactive domains during each phase of the model. The general description of the three domains in each phase includes a table outlining its characteristics. A composite case history illustrates how these generalizations manifest in actual patients, focusing on those who are severely and very severely affected.

By serving as a narrative or cognitive map, the phase description helps to lessen the intense fear and anxiety frequently experienced by the severe and very severely affected ME/CFS patients and their families. It will also help them to know they are not alone, their experience is shared by others, and they are understood. They now have a method of validating their experiences and making them known to others. The narrative helps them develop a sense of what is happening to them and provides a degree of order and coherency about their illness experience. In addition, the mapping aspect of the phase process helps promote understanding and adjustment to the cognitive impairments in concentration, memory, and decision making that often affect those with ME/CFS.

How Health Care Professionals Can Help

Severely and very severely affected patients suffer profoundly. For health care professionals to adequately treat their patients, they need to understand all that composes and creates their suffering: struggling with uncertainty, ambiguity, chronicity, stigmatization, trauma, and rejection. These elements create losses for the patient, and they subsequently grieve these many and varied losses, including lost friends, family, career, and life as they knew it (or imagined it). Not only do the patients grieve their losses and traumas, but so do the loved ones around them — spouses, parents, and children. Thus, to assess and treat, the suffering must first be described, understood, witnessed, and, most importantly, abided. Please see our full article in Healthcare for a list of important things health care professionals can do to help, in addition to the medical protocols.

• Read the full article: "Elements of Suffering in MyalgicEncephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief,Stigma, and Trauma in the Severely and Very Severely Affected" 
  
  
• Read more: Fennell Four Phase Model 

 

Contributed by
Jennifer Howard

What I Value

“Caritas, Veritas, Fortitudo . . . ”

During my childhood, I experienced medical conditions that heightened my awareness of how medicine was practiced and how society regards people who are ill.

As a young hospice worker, I saw the kind of assessment and care that I believed all people, not just the dying, deserved and required. At the same time, a paradigm shift was happening, from acute to chronic illness and thus an opportunity to reconsider how we care for the chronically afflicted and their loved ones. This paradigm shift continues worldwide.

Decades ago, I saw the epigraph, “Caritas, Veritas, Fortitudo,” carved into a building scheduled for demolition. These words captured for me what is required of those with chronic illness and those who work with them … these words guide us in our work:

• Caritas means not only “love,” but also compassion.
• Veritas refers not only to “truth,” but also to authenticity
• Fortitudo is not simply “strength, but also courage

It is my hope that our work gives professionals and caregivers the help they need to assist patients in achieving “Caritas, Veritas, Fortitudo” and, with them, better, more meaningful lives.

Written by Patricia A. Fennell

© Albany Health Management Associates