Research abstract:

Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls, by Caroline C. Kingdon, Erinna W. Bowman, Hayley Curran, Luis Nacul, Eliana M. Lacerda in PharmacoEconomics Open 2018 pp 1-12  [Online: 13 March 2018]

People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) continue to struggle to have their condition recognised as disabling in the face of public and professional prejudice and discrimination.

The aim of this study was to compare the functional status and well-being of people with well-characterised ME/CFS with people with multiple sclerosis (PWMS), as well as healthy controls (HCs).

In this cross-sectional study, we used data collected as part of the UK ME/CFS Biobank to compare actual participant scores from the Medical Outcomes Survey Short Form-36 v2™ (SF-36v2™) between groups, as a proxy for impact of disability, and from a bespoke questionnaire seeking data on employment and income.

People with ME/CFS scored significantly lower than PWMS or HCs in almost all SF-36v2™ areas. Prominent were lower scores for people with ME/CFS in the Physical Component Summary and Role Physical and Social Function domains, while the smallest differences were seen in the Mental Health domain. Responses to the bespoke questionnaire indicated that people with ME/CFS in this study work fewer hours and have lower incomes compared with people in the other two groups.

Using SF-36v2™ scores as a proxy, people with ME/CFS were measurably more disabled than PWMS or HCs in this study population. Furthermore, employment and income data are consistent with loss of functional status. These findings should encourage the health community to recognise the disabling effects of ME/CFS, to advocate for the needs of people with ME/CFS, and to investigate strategies to address the cost of the disease to both individuals and society.

Key Points for Decision Makers:

  • This study suggests that at a group level people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are more disabled than people affected by multiple sclerosis (MS), as measured by the SF-36v2™.
  • ME/CFS is associated with a reduction in time spent at work and lower income, compared with people affected by MS.
  • Further efforts should be made to identify and address the impact of ME/CFS to individuals and society.
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