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

RESTORATIVE PRACTICE'S NEXT PHASE

An Albany team integrates restorative practice with four-phase training in hopes of revolutionizing how we think about organizational behavior and relationships

Restorative justice has been described as “an ancient idea whose time has come.” The year 2005 was the right time for Jon Rice, a restorative justice trainer/facilitator and one of the organizers of a National Conference on Restorative Justice and Clergy Abuse, to invite Patricia Fennell, a research scientist, clinician, consultant, and the founder of Albany Health Management Associates, to share her four-phase treatment model during the pre-conference seminar. Thus began a more formal integration of two distinctly developed, yet synergistic, research-based approaches addressing our need for justice and healing. Among the key concepts in restorative practices — a term now used to connote a broadening of the paradigm and practices beyond the realm of criminal justice — are the elements of relationship and community.  

Restorative Practices (RP)

While modern practice dates to the 1970s and has gradually gained traction in recent years, it echoes social practices employed for centuries by many indigenous communities around the world, from Native Americans to the Maori of New Zealand. According to the International Institute for Restorative Practices (IIRP), RP refers to “a social science that studies how to build social capital and achieve social discipline through participatory learning and decision making.” 

The use of restorative practices, says the IIRP website, helps to reduce crime, violence, and bullying; improve human behavior; strengthen civil society; provide effective leadership; restore relationships; and repair harm.  Such practices include “the use of informal and formal processes that precede wrongdoing, those that proactively build relationships and a sense of community to prevent conflict and wrongdoing.” These practices are both proactive, and when necessary to address harm, responsive.

The formal end of the intervention spectrum is characterized by a structured facilitated meeting, of some or all those affected by a crime or wrongdoing.  This responsive “conference” involves asking pointed questions of  one who has done harm “to” another, the person who has had harm done “to” them, and those who care about each of those parties. The focus is  on what happened, the aftereffects, and what steps, if any, can be taken toward repairing that harm. This approach stands in contrast to a criminal justice system focused on “who dunnit” and the subsequent punishment that person “deserves.”

Fennell Four-Phase Treatment Model (FFTM)™

The model’s developer, Patricia Fennell, agrees with the essential tenet of restorative practice, that everything works much better if you don’t do stuff “to” people or “for” people, but instead, do things “with” people. The circle, a key formation within a restorative process  — whether in a family therapy session, a classroom, or a workplace meeting — implies equality among all the people involved, regardless of hierarchy. In hospice work, Fennell found that even if one is a clinician — an “expert” — that person also has to be a peer. The same is true with restorative practice. And this, Fennell says, “is revolutionary thinking.”  

As with RP, Fennell brings a collaborative approach to her work across a variety of conditions.  Starting in the early 1980s, when she was a founding clinician in one of the first sex-offense units in the country, she began developing what is now an internationally acclaimed treatment model. Bridging her work with trauma in multiple settings — including the trauma she encountered among the bereaved, from her perspective as a hospice worker — Fennell began thinking about how to apply what she was learning to the care of chronically ill patients. These formative experiences culminated in a new model for care based on the four phases she identified of what patients — and the people around them — experience during chronic illness. Understanding these phases — crisis, stabilization, resolution, and integration — helps the patient, caregivers, and family navigate the condition or situation, productively, at each phase. Fennell has published several books on the subject, which are widely used as textbooks. Whether one has dealt with one or more sides of sexual trauma, been the loved one, or not so loved one, of someone who has died, or is being treated for a physical or even a mental illness, the same frameworks apply, there are commonalities among them all.

An Amalgam

Fennell points out that the phase approach helps practitioners determine the “timing” of their restorative approaches. Together with timing, there are other shared values: 

• Equality between practitioner and individual/family/system
• Collaboration
• Appreciation for the physical, social, and psychological aspects and contexts within which one functions
• Respect that encourages the affected person(s) to determine whether, when, and how to share their story (or not)

Fennell and Rice have gone on to train or work with others from these blended perspectives, including: police who may have to respond to a mental-health situation; church members affected by clergy abuse; and direct-care staff working with residents recovering from mental illness. 

Rice also had a hand in work carried out by Fennell and David Kaczynski, whose involvement in the arrest of his brother Ted (known to the public as the Unabomber) brought him face to face with the issue of restorative versus retributive justice. Rice brought Fennell and Kaczynski together in the mid-2000s. When Kaczynski presented on violence and how it affects the various people involved,  Fennell would contextualize  the situation he described utilizing  the four phases: crisis, stabilization, resolution, and integration.

Fennell and Rice share restorative phase practices (RPP)™; with providers seeking to work  ‘with’ those who are experiencing complex chronic conditions in order to bring about effective and well-timed interventions.

Written by Jon Rice

© Albany Health Management Associates  

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Jon S. Rice, LCSW-R, has over 30 years of direct service experience working with youth, adults, and families across multiple areas of concern including child welfare; sexual abuse and other trauma; family and relationship conflicts; chronic illness; and forensic mental health. Jon is a Program Specialist 2 with the Office of Mental Health, is in private practice as senior clinician with AHMA, and co-leads psychotherapy groups at St. Anne Institute in Albany. First exposed to restorative justice through the Presbyterian Church (USA), Jon subsequently became a licensed restorative practices trainer. He has trained people in law enforcement; education; clergy abuse mediation; and graduate students, among others. He has served in various leadership roles through Habitat for Humanity and the Presbyterian Church. In his remaining spare time, and he has also found joy in coaching Little League baseball and youth basketball.