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 Patricia A Fennell, Nancy Dorr and Shane S George in Healthcare 2021, 9(5), 553; [doi.org/10.3390/healthcare9050553] 9 May 2021 (This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)

Research 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.

The four phases represent a progression of coping. They are crisis, stabilization, resolution, and integration. The model allows for therapeutic intervention in a flexible phase-specific manner so that individuals may integrate their illness into a meaningful life despite physical limitations.

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.

5.2. How Health Care Professional Can Help

While pilot assessment and treatment programs, in all domains, are underway worldwide, patients, their families and friends live and suffer with ME/CFS. They struggle to have whole lives and clinicians and caregivers struggle to help them manage. How can health care professionals help?
During the brief time available in a patient visit, here are some important things health care professionals can do, in addition to the medical protocols:

• Demonstrate to patients an appreciation and understanding of the ME/CFS experience;
• Convey to patients the compassion that comes from an appreciation of what the severely and very severely affected patient is experiencing;
• Communicate to patients that you believe what they are saying about their experiences and symptoms;
• As time and opportunity permits, be open to learning more about this poorly understood syndrome;
• Have available a short list of therapists and specialists, including those who do trauma work, grief work, family therapy, couples therapy, sleep hygiene and occupational therapy, for referral, or to be part of the treatment team;
• Become familiar with the suicide hotline;
• Have available a list of patient support groups for information, education and support;
• Have a list of available support groups and assistance for caregivers;
• Remember that it is very difficult to care for those who do not recover in any conventional sense and clinician resources for support are always a good consideration as well.

Severely and very severely affected patients suffer profoundly. In order 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, in order to assess and treat, the suffering must first be described, understood, witnessed, and, most importantly, abided.