Preliminary ICF core set for patients with myalgic encephalomyelitis/chronic fatigue syndrome in rehabilitation medicine

Abstract

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling condition with no diagnostic or prognostic markers. The patient group is heterogeneous, and impairments in functioning and disability vary between patients. The International Classification of Functioning, Disability and Health (ICF) is a wellestablished method to assess patient's functioning and disability. This study sets out a preliminary ICF Core Set for ME/CFS in rehabilitation medicine. However, this requires improvement, and approval by research society and clinicians working with ME/CFS. The introduction of post-exertional malaise as a new category in the ICF should also be considered. Objective: To create and evaluate a preliminary ICF Core Set for myalgic encephalomyelitis/chronic fatigue syndrome using a team-based approach. Design: Observational study. Subjects/patients: A total of 100 consecutive patients (mean age 45 years (standard deviation (SD) 9 years)) were assessed by a rehabilitation team and included in the study. Methods: A preliminary International Classification of Functioning, Disability and Health (ICF) Core Set was created, based on literature studies, and on discussion forums between the team and the researchers. Patients were assessed by a rehabilitation medicine team regarding impairments in body function, activity limitations, and restrictions in participation. Results: Clinical assessments of the component Body Functions found impairments in energy, fatigue, physical endurance, fatigability, sleep and pain in 82-100% of patients. At least half of the patients had impairments in higher cognitive functions, attention, and emotions, as well as sound and light hypersensitivity, general hyper-reactivity and thermoregulatory functions. For the component Activity/Participation, the most frequent limitations and restrictions were in doing housework (93%), assisting others (92%), acquisition of goods and services (90%), remunerative employment (87%), handling stressful situations (83%), preparing food (83%), recreation and leisure (82%), informal socializing (78%) and carrying out daily activities (77%). The most frequent degrees of impairments/limitations/ restrictions assessed were light and moderate, except for remunerative employment, for which restrictions were severe. Conclusion: Using unconventional methods, this study sets out a preliminary ICF Core Set list for patients with myalgic encephalomyelitis/chronic fatigue syndrome. Further studies are required to improve and test this Core Set in myalgic encephalomyelitis/chro nic fatigue syndrome populations.

Self-scored impairments in functioning and disability in post-COVID syndrome following mild COVID-19 infection

“…It is of interest to use the ICF-based questionnaires, for example, Functional Compass COVID-19, in investigation, assessment, making diagnosis, assignments, interventions, and follow-up evaluation, in order to provide the optimal rehabilitation measures for patients with late symptoms after COVID-19. The use of ICF-based assessment will also enable comparison of disability in these patients with that in other chronic conditions, such as chronic ischaemic heart disease, widespread pain, multiple sclerosis and myalgic encephalomyelitis/chronic fatigue syndrome (15,(25)(26)(27). The Functional Compass COVID-19 is, to our knowledge, and to date, the only questionnaire using ICF variables for late symptoms after COVID-19 infection.…”

“…At the same time, functional impairments have been discussed individually during individual appointments confirming disability at the individual level. Therefore, self-scoring of impairments in functions and activities/participations is another limitation and should be avoided when applying ICF assessments ( 27 ). Our previous study on another ICF-based self-scored questionnaire, The Functional Barometer for long-lasting pain, showed disagreement ranging from 18% to 51% in the degree of impairments scored by the multimodal rehabilitation team compared with those scored by the patients with chronic pain themselves ( 19 ).…”

Extremely Severe ME/CFS—A Personal Account

“…I also became extremely sensitive to, mostly visual but also some audio, stimuli [ 14 ]. I couldn’t tolerate bright colors and had to remove everything with bright colors from my room.…”

Using the ICF Framework to Assess Communicative Competence in Dyadic Communication among Children and Adolescents Who Use Augmentative and Alternative Communication Devices in Taiwan

“…Simeonsson, et al [ 44 ] and Pan, et al [ 45 ] indicated that obtaining a certain minimum number of codes is necessary for numerous groups and settings. A core set is a selected set of codes that are relevant to most people with a certain health condition or in a particular healthcare context; the codes comprehensively portray people’s level of function [ 46 , 47 , 48 , 49 ]. A core set is an evidence-based shortlist, including a brief core set (20–30 codes) and a comprehensive core set (70–100 codes) [ 37 , 50 ].…”