A Natural History of Disease Framework for Improving the Prevention, Management, and Research on Post-viral Fatigue Syndrome and Other Forms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract

We propose a framework for the treatment, rehabilitation, and research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) using a natural history of disease approach to outline the distinct disease stages, with an emphasis on cases following infection to provide insights into prevention. Moving away from the method of subtyping patients based on the various phenotypic presentations and instead reframing along the lines of disease progression could help with defining the distinct stages of disease, each of which would benefit from large prospective cohort studies to accurately describe the pathological mechanisms taking place therein. With a better understanding of these mechanisms, management and research can be tailored specifically for each disease stage. Pre-disease and early disease stages call for management strategies that may decrease the risk of long-term morbidity, by focusing on avoidance of further insults, adequate rest to enable recovery, and pacing of activities. Later disease stages require a more holistic and tailored management approach, with treatment—as this becomes available—targeting the alleviation of symptoms and multi-systemic dysfunction. More stringent and standardised use of case definitions in research is critical to improve generalisability of results and to create the strong evidence-based policies for management that are currently lacking in ME/CFS.

Heterogeneity in Measures of Illness among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Explained by Clinical Practice: A Study in Seven U.S. Specialty Clinics

“…Presenting research data in a format that shows heterogeneity, such as scatter plots or histograms, will help clarify the challenge. Variations in patient demographics, co-morbid conditions, medications, and duration of illness can all contribute to heterogeneity [ 16 ].…”

Medical Complexity and Healthcare Utilization Among Patients Attending Three U.S. Post- COVID Clinics

“…Subspecialists were primarily pulmonologists, neurologists, and cardiologists, which re ects the care needs outlined by providers at other post-COVID clinics (20). Without evidencebased therapies, multiple visits to a range of specialists might be required to determine how best to manage symptoms associated with PCC (30). While primary care played a role in the management of these patients, these high rates of subspecialty referrals might signal challenges in care coordination that have been reported in other studies, such as increased wait times and frustration among patients (31).…”

‘We have no services for you… so you have to make the best out of it’: A qualitative study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients’ dissatisfaction with healthcare services

“…Its aetiology is unknown, and there are no biomarkers enabling accurate identification of cases, with diagnosis reached by excluding alternative diagnoses. 12 The core symptoms of ME/CFS are debilitating fatigue that is worsened by activity; is not caused by excessive cognitive, physical, emotional or social exertion 13 ; is not significantly relieved by rest; and postexertional malaise after activity is commonly reported. Patients typically experience sleep disturbances, problems with thinking and concentration, pain, and dizziness.…”