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

LONG HAUL COVID OFFERS HOPE OF BETTER TREATMENT OPTIONS FOR CHRONIC ILLNESS

As of April 1, 2022 there are over 80 million COVID infection cases that have been reported in the U.S.¹   It is anticipated that roughly half of these patients will develop Long COVID.²

Rarely discussed are the similarities of symptoms of Long COVID, ME/CFS (also known as Chronic Fatigue Syndrome), Lyme disease and other chronic illnesses.  These similarities of symptoms has led to the proposal of a new classification of these illnesses as PostActive Phase of Infection Syndromes or PAPIS.³ Researchers Dr. Ken Friedman⁴ and Dr. David Maughan⁵ describe the similarities between ME/CFS and Long COVID, how their families have been affected, and discuss how treatment options for ME/CFS may have implications for Long COVID in their recent interview on the “Paradigms” podcast.⁶

Drs. Friedman and Maughan discuss the importance of classifying Long COVID, ME/CFS, Lyme disease, and other similar chronic conditions as PAPIS for the advancement of research, improving clinical care and finding cures.  The PAPIS classification is more fully discussed in a recent journal article.⁷

COVID-19 is an initial respiratory infection caused by SARS-CoV-2, a coronavirus discovered in 2019. According to the CDC, COVID spreads when an infected person breathes out droplets or particles.⁸  You may become infected by breathing in those droplets or particles, having droplets land on your eyes, nose or mouth, or touching your eyes, nose or mouth when the virus is on your hands.  Symptoms can range from mild to severe. Some people may infect others without realizing it because not all who are infected have symptoms.⁹

Long COVID is defined as the lingering symptoms following COVID-19 that are known to last weeks or months.   However, it is too early to know the long-term outlook for this disease.¹⁰   “Long COVID” can be experienced by anyone who has had COVID-19, even if their illness was mild, or they were free of symptoms, and the symptoms of Long COVID may not appear for weeks after infection.

Long COVID symptoms and their similarities to other chronic illnesses are having a dramatic impact on the funding of chronic disease research which has long been neglected. It appears that the Coronavirus pandemic, and the unanticipated Long COVID consequence is now breathing new life into the challenge of finding better treatment options for chronic illness.¹¹

NOTES 

1. U.S. COVID-19 Statistics — https://covidusa.net/
2. “How Many People Get ‘Long COVID?” — https://www.sciencedaily.com/releases/2021/10/211013114112.htm
3. Friedman KJ, Murovska M, Pheby DFH, Zalewski P. — “Our Evolving Understanding of ME/CFS” — Medicina, 2021 — https://www.mdpi.com/1648-9144/57/3/200\
4. Dr. Ken Friedman, Ph.D. — Associate Professor of Medicine, Rowan University School of Osteopathic Medicine
5. Dr. David Maughan, Ph.D. — Research Professor, University of Vermont College of Medicine
6. Paradigms Podcast: Dr. Ken Friedman and Dr. David Maugham — “ME/CFS and Long Haul Covid Similarities and Ramifications” — https://paradigms.life/2022/dr-ken-friedman-and-dr-david-maughan-me-cfs-and-long-haul-covid-similarities-and-ramifications/
7. Friedman KJ, Murovska M, Pheby DFH, Zalewski P. — “Our Evolving Understanding of ME/CFS” — Medicina. 2021; 57(3):200 — https://doi.org/10.3390/medicina57030200
8. “How COVID-19 Spreads” — https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/how-covid-spreads.html
9. “Symptoms of COVID-19” — https://www.cdc.gov/coronavirus/2019-ncov/symptoms-testing/symptoms.html
10. Raveendran, A. V., Jayadevan, R., & Sashidharan, S. (2021) — “Long COVID: An overview” — Diabetes & metabolic syndrome, 15(3), 869–875 — https://doi.org/10.1016/j.dsx.2021.04.007
11. “How long COVID sheds light on other mysterious (and lonely) chronic illnesses” (NPR) —https://www.npr.org/sections/health-shots/2022/02/28/1083458296/long-covid-autoimmune-meghan-orourke-invisible-kingdom

 

 

 

Restorative Practice in Turbulent Times: Pandemic and Beyond

by Jon S. Rice, LCSW-R

“Being able to feel safe with other people is probably the single most important aspect of mental health; safe connections are fundamental to meaningful and satisfying lives,” says, Bessel van der Kolk, M.D., in his New York Times best seller, The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma.1

I want to live in a world where my children, and all of us, can feel safe, experiencing meaningful and satisfying lives. However, the pandemic with its many tentacles that have been imposed upon us² has threatened the very connections which are so necessary to fulfilling this desire. Personal disconnection has occurred in a variety of ways. Children and their teachers may have been separated by plexiglass if in-person instruction has happened at all.  Our facial expressions have been obscured by masks.  Illness, hospitalizations and deaths have severed connections with loved ones.  

Underlying such serious concerns lie fear, anxiety, and suffering.  It is fitting to be reminded of nature’s realm where there may exist a place of calm. For example, the “Eye” amid a hurricane’s turbulence.³ The integration of restorative practices and the Internal Family Systems’ model of Self-Leadership, provides a pathway to experience greater calm and connection – to be the “I” in the storm.4

Perhaps it’s these fears, sorrows, and woundedness we experience in the face of disconnecting experiences, of which Walt Whitman in his poem “Song of Myself” writes:

Do I contradict myself?
Very well then, I contradict myself.
(I am large, I contain multitudes)

When we apply restorative principles (e.g., doing things "with" rather than punishing, or neglecting our myriad thoughts, feelings, images, and sensations), we open space for something else to emerge. It’s here we experience our core "Self."⁶ It’s here we are in the best place to connect with others, offer healing opportunities, promote well-being, and become the “I” in the storm. 

It’s becoming the “I” in the storm, where we embrace Self-Led Restorative Practice, not as a new program or initiative, but rather as a way of thinking and being. From this focused place we create safe spaces for real conversations that deepen our relationships and build stronger more connected communities.7

Within these safe spaces, real conversations and more connected communities can happen – in schools, workplaces, neighborhoods, and families. Imagine the potential for more meaningful and satisfying lives and the impact such communities can have on policies and practices which affect us all!⁸  

To hear multiple perspectives from members of the global Self-Leadership Collaborative⁹ on ways such paradigms and practices are being employed in schools, please visit the Foundation for Self Leadership’s free 3-part 2022 Series, "Sustaining Hope in Our Schools" (recordings available).¹⁰ 

NOTES:

1. The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma, by Bessel van der Kolk M.D. (2015, p.81)
2. Managing Chronic Illness Using the Four-Phase Treatment Approach, by Patricia A. Fennell (2003)
3. Introduction to the Internal Family Systems Model, by Richard C. Schwartz, Ph.D. (2001)
4. Richard C. Schwartz, Ph.D., Personal Communication (November 8, 2018)
5. Walt Whitman, “Song of Myself” (1892, Stanza 51)
6. Richard C. Schwartz, Ph.D., Personal Communication (November 8, 2018)
7. "Clearing Away the Stigma Around Mental Health Issues," by Mark vander Vennen (Podcast, 2016)
8. “Proactive Restorative Practices: Creating the Conditions for Individuals and Communities to Flourish,” by Gina Baral Abrams (DrPH, EdM, LSW), Mary Jo Hebling (MS), Beth Smull (MS, CADC), (PDF, 2018)
9. Self-Leadership Collaborative 
10. Foundation for Self Leadership’s free 3-part Series, “Sustaining Hope in Our Schools” (recordings available)

Jon S. Rice, LCSW-R is Sr. Clinician with Albany Health Management Associates, Inc. and is a member of the Self-Leadership Collaborative.  He received his Bachelor of Social Work degree from Cornell University, and his Master of Social Work degree from the University at Albany. He has been serving children, families, and the community in several roles for over 30 years: Therapist; Playground Director; Division Director; Coach; Board Member; and Survivor Outreach Liaison. He’s worked in multiple settings ranging from a neighborhood center, trauma survivors’ programs, forensic mental health to community action. Jon is a Program Specialist II with the New York State Office of Mental Health (OMH) where he also integrates his passion for restorative practices and the Internal Family Systems framework, developed over the past 2 decades, to support wellness and healing in schools and relationships. He is also a member of the Lansingburgh School District (New York State) Leadership Team as it participates in the National Safe Supportive Schools Learning Collaborative (S3-LC).

TWO POSTER PRESENTATIONS FOR THE 7th SYSTEMIC SCLEROSIS WORLD CONGRESS

Albany Health Management Associates has contributed to Poster Presentations for the 7th Systemic Sclerosis World Congress, March 10-12, 2022.

• "Correlates of Cancelled Healthcare Appointments in Patients with Systemic Sclerosis During the COVID-19 Pandemic" 
  
  
• "Positively Impacting Patients with Scleroderma Through Interprofessional Education: An Emerging Approach" 
  
  

The World Scleroderma Foundation, based in Switzerland, is a non-profit, non-governmental foundation promoting scleroderma research and support for patients suffering from scleroderma. The Foundation is committed to improving the quality of life for scleroderma sufferers and their families.

The 7th Systemic Sclerosis World Congress challenges the scientific committee to provide an exciting and up to date scientific program. A combination of hands-on workshops, lectures, oral presentations, and satellite sessions will provide a mix of experiences for attendees that devote their work to people with scleroderma.

Contributed by Patricia A. Fennell
Albany Health Management Associates

HOLIDAY ADVICE BY PATRICIA FENNELL IN WebMD

In the midst of a busy holiday season, it is more important than ever for those with chronic illness to communicate, advocate and maintain clarity around their capacities and needs. With the added concerns and precautions of navigating COVID-19, supportive conversation with loved ones is key to managing expectations and creating joyful holiday experiences.

Clarity & Advocacy

Chronic illness calls for clarity and advocacy. Friends and family need clear communication in order to manage expectations. Patricia Fennell (MSW, LCSW-R) coaches patients on how to negotiate their needs. "People don't know how to ask for what they need. They'll stay home from a holiday party because they can't stand that long. We need a new social etiquette for people with chronic illness." Fennell advises stating your needs in behavioral rather than general terms. "Don't just tell Aunt Jane you'll have to leave early. Tell her you've been feeling fatigued and can stay only two or three hours. Also, tell her that standing tires you out — ask her to have a seat for you. Putting it in behavioral terms makes it easier for Aunt Jane to conceptualize and to accommodate." 

Firm & Flexible Boundaries

No one understands your needs better than you. Pre-set boundaries are key in maintaining optimal health over the holidays. Having predetermined end times for hosted gatherings, as well as extra prep and post time built into your schedule for recovery can be helpful. Keeping departure time open ended at gatherings is a good idea, with a gentle way to excuse yourself when you're ready. The best boundary to feel comfortable with is simply, saying no when needed.

Ask For & Employ Help

When hosting, ask family or close friends to assist with cooking or other tasks that can be shared. "Asking in advance allows people to help gracefully." Order groceries or catering in advance and have it delivered. Hire extra support for pre and post clean-up. Prep as much as possible in advance and consider the use of disposable dishes and flatware when appropriate. 

Gratitude & Giving

The holidays can be an excellent time to reflect on what you are most grateful for, and to focus on the spirit of giving. "Take toys to the Marine Toys-for-Tots Foundation, take food to homebound seniors through Meals on Wheels, or provide goods and services to those in need. It will boost your spirit and remind you what the holidays are about."

The numbers of people with chronic illness are growing, and that's not necessarily a bad thing, says Fennell. "People are living today with heart disease and cancers that were once considered terminal illnesses, not chronic illnesses." Next time you are at a holiday party, or anywhere, look around. Some of those healthy-looking people may have chronic illnesses too. The growing numbers also mean you're not alone. 

Read full WebMD article

Contributed by
Jennifer Howard

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

"The Climb" — A film production by Creative Action Unlimited

The Climb, an original film about class and race in America, will premiere November 19 at Madison Theater in Albany, New York. 

The Climb is a project by Creative Action Unlimited. It raises public awareness and inspires community action about America’s systemic economic oppression of Black people.

Performed by Kristoph DiMaria, Jae Gayle, Michael Lake, Elisheva Novella, Tony Pallone, Sara Paupini, Eleah Peal, David Quinones and Siobhan Shea 

Directed by Michael Kennedy with Maghen Ryan, Assistant Director, and Cinematography by John Romeo. 

• View the film trailer here: https://youtu.be/LnnUPWiEzTU
  
  
• Limited presale tickets may be purchased here:  https://form.jotform.com/212735840032044 
  
  
• Tickets will be available at the door the night of the event.
  
  
• All screenings begin at 7 p.m. Premier on November 19, 2021, with subsequent showings on November 20, 26 and 27, 2021 at The Madison Theatre, 1036 Madison Avenue, Albany, NY 12208.
  
  
• Please note: proof of vaccination is required for admission.

Contributed by Jennifer Howard