Fibromyalgia is disabling (duh!) and has a greater impact on functional status and well-being than other chronic diseases such as cancer, says a UK public health researchers report. The emotional burden of FM is felt by lay carers as well as sufferers.
The study aimed to investigate the functional status and well-being of people with ME/CFS and their lay carers, and to compare them with people with other chronic conditions. Since GPs may refer to cases of ME/CFS by different names, cases that had been diagnosed by GPs with any of the following: chronic fatigue syndrome (CFS), ME, post-viral asthenic syndrome (PVAS), fatigue syndrome (FS), fibromyalgia (FMS), post-infectious encephalitis (PIE) and post-viral fatigue syndrome (PVFS), were included in the study. Patients were considered as potential cases if any of the above diagnoses appeared in their individual electronic medical records.
As we know, diagnosis of our condition 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 the diverse clinical nature of the condition and a lack of reliable biomarkers for diagnosis and outcome measures. The well-being of family members and those who care for us are also likely to be affected.
The functional status and well-being of a well characterised sample of individuals was measured using SF-36, a widely used and well-validated instrument, which provides generic (i.e. universally-valued, and not specific to age, disease or condition or treatment) measures of disease impact on physical, physiological, social functioning and roles. Unlike disease specific measures, SF-36 can be adequately used for comparisons between people with a range of different conditions.
The scores for the Physical and Mental Health Component summaries and the scales within each of these domains were considerably and consistently lower in people with ME/CFS, when contrasted with individuals with a range of other chronic diseases. This demonstrates that ME/CFS is not only physically disabling, but also has a significant impact on mental health.
The results of the study highlight the disabling nature of ME/CFS (Just wish our social security departments were given a copy of the report!). However, the lack of bio-markers and the fluctuating nature and lack of specificity of symptoms makes disease characterisation and disability assessment challenging.
Quality of life is inversely related to distress, disability and loss of function, and is associated with the ability of individuals to remain active and perform roles in society. A major goal of people with chronic diseases is to achieve effectiveness in life and to preserve function and well-being. However, people with ME/CFS are (generally) failing to achieve these goals, and their carers’ emotional well-being is also being affected. Recognition of the level of disability faced by us is essential for planning support services that adequately meet our needs.
***I apologise if this was difficult to read – but you should see the actual study! I tried, as best I could, to use ‘normal’ English.