Healthcare, Special Issue: ME/CFS ― The Severely and Very Severely Affected

This page contains a list of the articles in the special issue of Healthcare ME/CFS: The Severely and Very Severely Affected Psychology, which concerns housebound and bedbound Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients. Articles were published online from 2020 to 2021.

Intention
The intention was to redefine ME/CFS to show the seriousness of the disease. According to the editors, severely and very severely affected patients have been excluded from all literature and case definitions of ME/CFS, and diagnosis, patient management, and case definitions have been based on the more mobile ME/CFS patient. The editors refer to the approximately 25% of ME/CFS patients estimated to have severe or very severe ME/CFS as a "hidden patient population".

Editors

 * Kenneth J. Friedman, Ph.D. - Guest editor
 * Dr. Lucinda Bateman - co-guest editor
 * Dr. Kenny De Meirleir - co-guest editor

Summary video

 * "Severe & Very Severe ME/CFS", Dialogues for a neglected illness, produced by Natalie Boulton.

Reviews
"Abstract - We have developed a Europe-wide approach to investigating the economic impact of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), facilitating acquisition of information on the economic burden of ME/CFS, and international comparisons of economic costs between countries. The economic burden of ME/CFS in Europe appears large, with productivity losses most significant, giving scope for substantial savings through effective prevention and treatment. However, economic studies of ME/CFS, including cost-of-illness analyses and economic evaluations of interventions, are problematic due to different, arbitrary case definitions, and unwillingness of doctors to diagnose it. We therefore lack accurate incidence and prevalence data, with no obvious way to estimate costs incurred by undiagnosed patients. Other problems include, as for other conditions, difficulties estimating direct and indirect costs incurred by healthcare systems, patients and families, and heterogeneous healthcare systems and patterns of economic development across countries. We have made recommendations, including use of the Fukuda (CDC-1994) case definition and Canadian Consensus Criteria (CCC), a pan-European common symptom checklist, and implementation of prevalence-based cost-of-illness studies in different countries using an agreed data list. We recommend using purchasing power parities (PPP) to facilitate international comparisons, and EuroQol-5D as a generic measure of health status and multi-attribute utility instrument to inform future economic evaluations in ME/CFS."
 * The Development of a Consistent Europe-Wide Approach to Investigating the Economic Impact of Myalgic Encephalomyelitis (ME/CFS): A Report from the European Network on ME/CFS (EUROMENE) (Apr 7, 2021) by Derek F.H. Pheby, Diana Araja, Uldis Berkis, Elenka Brenna, John Cullinan, Jean-Dominique de Korwin, Lara Gitto, Dyfrig A Hughes, Rachael M Hunter, Dominic Trepel and Xia Wang-Steverding. Healthcare 2020, 8(2), 88.

"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."
 * Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected (May 9, 2021) by Patricia A. Fennell, Nancy Dorr and Shane S. George. Healthcare 2021, 9(5), 553.

"Abstract - Children with ME/CFS who are severely ill are bedbound and homebound, and oftentimes also wheelchair-dependent. Very seriously affected children are often too sick for doctor’s office visits, let alone school attendance. The most recent data estimate that 2–5% of children may be severely affected or bedridden. However, there is no recent research that confirms these numbers. The severely ill receive little help from their schools, and are socially isolated. This article outlines several suggestions for the type of education that students with ME/CFS should be receiving and develops a preliminary sketch of the web of resources and emergent techniques necessary to achieve these outcomes."
 * The Impact of Severe ME/CFS on Student Learning and K–12 Educational Limitations (May 25, 2021) by Faith R. Newton. Healthcare 2021, 9(6), 627.

"Abstract - Adult patients affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are at an increased risk of death by suicide. Based on the scientific literature and our clinical/research experiences, we identify risk and protective factors and provide a guide to assessing and managing suicidality in an outpatient medical setting. A clinical case is used to illustrate how information from this article can be applied. Characteristics of ME/CFS that make addressing suicidality challenging include absence of any disease-modifying treatments, severe functional limitations, and symptoms which limit therapies. Decades-long misattribution of ME/CFS to physical deconditioning or psychiatric disorders have resulted in undereducated healthcare professionals, public stigma, and unsupportive social interactions. Consequently, some patients may be reluctant to engage with mental health care. Outpatient medical professionals play a vital role in mitigating these effects. By combining evidence-based interventions aimed at all suicidal patients with those adapted to individual patients’ circumstances, suffering and suicidality can be alleviated in ME/CFS. Increased access to newer virtual or asynchronous modalities of psychiatric/psychological care, especially for severely ill patients, may be a silver lining of the COVID-19 pandemic."
 * Identifying and Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (May 25, 2021) by Lily Chu, Meghan Elliott, Eleanor Stein and Leonard A. Jason. Healthcare 2021, 9(6), 629.

"Abstract - This article provides a narrative review on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) through a psychosocial lens and examines how this impairment affects its sufferers during adolescence and adulthood, as well as how it impacts family caregivers and healthcare professionals' mental health. Since there has been a lack of investigation in the literature, the primary psychosocial stressor that this review focuses on is loneliness. As such, and in an attempt to help establish a theoretical framework regarding how loneliness may impact ME/CFS, loneliness is comprehensively reviewed, and its relation to chronic illness is described. We conclude by discussing a variety of coping strategies that may be employed by ME/CFS individuals to address their loneliness. Future directions and ways with which the literature may investigate loneliness and ME/CFS are discussed."
 * The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Oct 20, 2021) by Samir Boulazreg and Ami Rokach. Healthcare 2020, 8(4), 413.

Research
"Introduction - In a study of 429 adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), we demonstrated that 86% had symptoms of orthostatic intolerance in daily life. Using extracranial Doppler measurements of the internal carotid and vertebral arteries during a 30-min head-up tilt to 70"
 * Cerebral Blood Flow Is Reduced in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients During Mild Orthostatic Stress Testing: An Exploratory Study at 20 Degrees of Head-Up Tilt Testing (Jun 13, 2020) by C (Linda) M.C. van Campen, Peter C. Rowe and Frans C. Visser. Healthcare 2020, 8(2), 169.


 * Two-Day Cardiopulmonary Exercise Testing in Females with a Severe Grade of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Comparison with Patients with Mild and Moderate Disease (Jun 30, 2020) by C (Linda) M. C. van Campen, Peter C. Rowe and Frans C. Visser. Healthcare 2020, 8(3), 192. "Introduction - Effort intolerance along with a prolonged recovery from exercise and post-exertional exacerbation of symptoms are characteristic features of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The gold standard to measure the degree of physical activity intolerance is cardiopulmonary exercise testing (CPET). Multiple studies have"

"Introduction - Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe and disabling chronic disease. Grading patient’s symptom and disease severity for comparison and therapeutic decision-making is necessary. Clinical grading that depends on patient self-report is subject to inter-individual variability. Having more objective measures to"
 * Validation of the Severity of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Other Measures than History: Activity Bracelet, Cardiopulmonary Exercise Testing and a Validated Activity Questionnaire: SF-36 (Aug 14, 2020) by C. (Linda) M. C. van Campen, Peter C. Rowe and Frans C. Visser. Healthcare 2020, 8(3), 273.

"Introduction - In a large study with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients, we showed that 86% had symptoms of orthostatic intolerance in daily life and that 90% had an abnormal reduction in cerebral blood flow (CBF) during a standard tilt test. A standard"
 * Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients (Oct 11, 2020) by C (Linda) MC van Campen, Peter C. Rowe and Frans C Visser. Healthcare 2020, 8(4), 394.

"Abstract - Fatigue can accompany various diseases; however, fatigue itself is a key symptom for patients with chronic fatigue syndrome (CFS). Due to the absence of biological parameters for the diagnosis and severity of CFS, the assessment tool for the degree of fatigue is very"
 * Reliability and Validity of the Modified Korean Version of the Chalder Fatigue Scale (mKCFQ11) (Oct 24, 2020) by Yo-Chan Ahn, Jin-Seok Lee and Chang-Gue Son. Healthcare 2020, 8(4), 427.

"Abstract - Persons living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) vary widely in terms of the severity of their illness. It is estimated that of those living with ME/CFS in the United States, about 385,000 are homebound. There is a need to know more about"
 * Bedridden Status among Those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by (Jan 20, 2021) Karl Conroy, Shaun Bhatia, Mohammed Islam and Leonard A. Jason. Healthcare 2021, 9(2), 106.

"Abstract - Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a rare disease with no known etiology. It affects 0.4% of the population, 25% of which experience the severe and very severe categories; these are defined as being wheelchair-, house-, and bed-bound. Currently, the absence of biomarkers"
 * Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (Feb 5, 2021) by Victoria Strassheim, Julia L. Newton and Tracy Collins. Healthcare 2021, 9(2), 168.

"Abstract - One in four myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients are estimated to be severely affected by the disease, and these house-bound or bedbound patients are currently understudied. Here, we report a comprehensive examination of the symptoms and clinical laboratory tests of a cohort"
 * A Comprehensive Examination of Severely Ill ME/CFS Patients (Sep 29, 2021) by Chia-Jung Chang, Li-Yuan Hung, Andreas M. Kogelnik, David Kaufman, Raeka S. Aiyar, Angela M. Chu, Julie Wilhelmy, Peng Li, Linda Tannenbaum, Wenzhong Xiao and Ronald W. Davis. Healthcare 2021, 9(10), 1290.

"Background - Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition associated with several negative health outcomes. A hallmark of ME/CFS is decreased exercise capacity and often profound exercise intolerance. The causes of ME/CSF and its related symptoms are unknown, but there are indications"
 * Cardiac Dimensions and Function are Not Altered among Females with the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Oct 16, 2021) by Per Ole Iversen, Thomas Gero von Lueder, Kristin Reimers Kardel and Katarina Lien. Healthcare 2020, 8(4), 406.

"Abstract - Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex multi-system disease with no cure and no FDA-approved treatment. Approximately 25% of patients are house or bedbound, and some are so severe in function that they require tube-feeding and are unable to tolerate light, sound,"
 * Chronic Fatigue Syndrome: A Case Report Highlighting Diagnosing and Treatment Challenges and the Possibility of Jarisch–Herxheimer Reactions if High Infectious Loads Are Present (Nov 10, 2021) by Rachel K. Straub and Christopher M. Powers. Healthcare 2021, 9(11), 1537.

Learn more

 * Read the issue