The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers

Abstract

BackgroundDiagnosis of myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS is largely based on clinical history, and exclusion of identifiable causes of chronic fatigue. Characterization of cases and the impact of interventions have been limited due to clinical heterogeneity and a lack of reliable biomarkers for diagnosis and outcome measures. People with ME/CFS (PWME) often report high levels of disability, which are difficult to measure objectively. The well being of family members and those who care for PWME are also likely to be affected. This study aimed to investigate the functional status and well being of PWME and their lay carers, and to compare them with people with other chronic conditions.MethodsWe used a cross sectional design to study 170 people aged between 18 and 64 years with well characterized ME/CFS, and 44 carers, using SF-36 v2™. Mean physical and mental domains scores (scales and component summaries) were calculated and compared internally and externally with reference standards for the general population and for population groups with 10 chronic diseases.ResultsSF-36 scores in PWME were significantly reduced, especially within the physical domain (mean norm-based Physical Component Summary (PCS) score = 26.8), but also within the mental domain (mean norm-based score for Mental Component Summary (MCS) = 34.1). The lowest and highest scale scores were for "Role-Physical" (mean = 25.4) and "Mental Health" (mean = 36.7) respectively. All scores were in general lower than those for the general population and diseased-specific norms for other diseases. Carers of those with ME/CFS tended to have low scores in relation to population norms, particularly within the mental domain (mean = 45.4).ConclusionsME/CFS is disabling and has a greater impact on functional status and well being than other chronic diseases such as cancer. The emotional burden of ME/CFS is felt by lay carers as well as by people with ME/CFS. We suggest the use of generic instruments such as SF-36, in combination of other objective outcome measurements, to describe patients and assess treatments.

Perspectives of Time and Occupation: Experiences of People with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

“…The National Institute for Health and Care Excellence (NICE) guidelines (2007) for CFS/ME in the UK concluded that this condition effects 0.2-0.4% of the population and has been shown to have a greater impact on functional status and well-being than other chronic conditions (Nacul et al, 2011). Full recovery is rare and without intervention its natural history indicates on-going functional impairment and disability (Cairns & Hotopf, 2005;Jason et al, 2011).…”

Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/chronic fatigue syndrome

“…Compared with many other chronic diseases, patients with ME/CFS have a lower quality of life, with major implications for patients and their families and for society (2,3). Recent research suggests that ME/CFS is associated with changes in fundamental processes of energy metabolism (4,5).…”

Hva er egentlig myalgisk encefalopati?

“…På gruppenivå har pasienter med CFS/ME betydelig lavere funksjonsnivå enn pasienter med andre kroniske sykdommer som for eksempel kreft, depresjon eller revmatoid artritt (68,69) , se figur 1. De internasjonale konsensuskriteriene, ICC,fra august 2011 foreslår følgende inndeling (70) : • Ved mild grad er aktivitetsnivået redusert med minst 50 % sammenlignet med før sykdomsdebut, dvs.…”