Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls

doi:10.1007/s41669-018-0071-6

. 2018 Dec;2(4):381-392.

doi: 10.1007/s41669-018-0071-6.

Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls

Caroline C Kingdon¹, Erinna W Bowman², Hayley Curran², Luis Nacul², Eliana M Lacerda²

Affiliations

¹ International Centre for Evidence in Disability, Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, Keppel Street, London, WC1E 7HT, UK. caroline.kingdon@lshtm.ac.uk.
² International Centre for Evidence in Disability, Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, Keppel Street, London, WC1E 7HT, UK.

PMID: 29536371
PMCID: PMC6249197
DOI: 10.1007/s41669-018-0071-6

Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls

Caroline C Kingdon et al. Pharmacoecon Open. 2018 Dec.

. 2018 Dec;2(4):381-392.

doi: 10.1007/s41669-018-0071-6.

Authors

Caroline C Kingdon¹, Erinna W Bowman², Hayley Curran², Luis Nacul², Eliana M Lacerda²

Affiliations

¹ International Centre for Evidence in Disability, Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, Keppel Street, London, WC1E 7HT, UK. caroline.kingdon@lshtm.ac.uk.
² International Centre for Evidence in Disability, Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, Keppel Street, London, WC1E 7HT, UK.

PMID: 29536371
PMCID: PMC6249197
DOI: 10.1007/s41669-018-0071-6

Abstract

Background: 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.

Objective: 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).

Methods: 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.

Results: 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.

Conclusions: 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.

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Conflict of interest statement

Conflicts of Interest

Caroline Kingdon, Erinna Bowman, Hayley Curran, Luis Nacul, and Eliana Lacerda declare that they have no conflicts of interest.

Human Participants

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Ethical Approval

The UK ME/CFS Biobank received ethical approval from the London School of Hygiene & Tropical Medicine (LSHTM) Ethics Committee (ref. 6123), the National Research Ethics Service (NRES) London-Bloomsbury Research Ethics Committee (REC; ref. 11/LO/1760, IRAS ID: 77765), and the NHS Research Governance and Developments Offices (R&D), which oversee the recruitment of research participants from government health services.

Informed Consent

Written informed consent was obtained from all individual participants included in the study. Participants were encouraged to ask questions and were free to withdraw at any time.

Figures

**Fig. 1**
Median SF-36v2^TM scores for people with ME/CFS, people with MS, and healthy controls. ME myalgic encephalomyelitis, *CFS* chronic fatigue syndrome, MS multiple sclerosis

**Fig. 2**
Weekly hours of work and study for healthy controls, people with ME/CFS, and people with MS, at recruitment (post-disease onset). ME myalgic encephalomyelitis, *CFS* chronic fatigue syndrome, MS multiple sclerosis

**Fig. 3**
Employment status of people with ME/CFS and people with MS, at two time points: 6 months before disease onset, and at recruitment. ME myalgic encephalomyelitis, *CFS* chronic fatigue syndrome, MS multiple sclerosis

**Fig. 4**
Annual income of people with ME/CFS 6 months prior to disease onset and at recruitment. ME myalgic encephalomyelitis, *CFS* chronic fatigue syndrome, *PWME* people with ME/CFS

**Fig. 5**
Annual income of people with ME/CFS, people with MS, and HCs at recruitment. ME myalgic encephalomyelitis, *CFS* chronic fatigue syndrome, MS multiple sclerosis, *HCs* healthy controls

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References

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1. ME Association. ESA—changes to the Working Capability Assessment descriptors. 2011. http://www.meassociation.org.uk/2011/02/esa-–-changes-to-the-working-cap.... Accessed 28 Feb 2018.
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[1] Olive M. The politics of disablement: a sociological approach critical texts in social work and the welfare state. Basingstoke: Macmillan and St Martin’s Press; 1990.

[2] Olive M. The politics of disablement: a sociological approach critical texts in social work and the welfare state. Basingstoke: Macmillan and St Martin’s Press; 1990.

[3] ME Association. ESA—changes to the Working Capability Assessment descriptors. 2011. http://www.meassociation.org.uk/2011/02/esa-–-changes-to-the-working-cap.... Accessed 28 Feb 2018.

[4] ME Association. ESA—changes to the Working Capability Assessment descriptors. 2011. http://www.meassociation.org.uk/2011/02/esa-–-changes-to-the-working-cap.... Accessed 28 Feb 2018.

[5] Strassheim V, et al. What is known about severe and very severe chronic fatigue syndrome? A scoping review. Fatigue Biomed Health Behav. 2017;5(3):167–183. doi: 10.1080/21641846.2017.1333185. - DOI

[6] Strassheim V, et al. What is known about severe and very severe chronic fatigue syndrome? A scoping review. Fatigue Biomed Health Behav. 2017;5(3):167–183. doi: 10.1080/21641846.2017.1333185. - DOI

[7] Cella M, Sharpe M, Chalder T. Measuring disability in patients with chronic fatigue syndrome: reliability and validity of the Work and Social Adjustment Scale. J Psychosom Res. 2011;71(3):124–128. doi: 10.1016/j.jpsychores.2011.02.009. - DOI - PubMed

[8] Cella M, Sharpe M, Chalder T. Measuring disability in patients with chronic fatigue syndrome: reliability and validity of the Work and Social Adjustment Scale. J Psychosom Res. 2011;71(3):124–128. doi: 10.1016/j.jpsychores.2011.02.009. - DOI - PubMed

[9] Dinos S, et al. A systematic review of chronic fatigue, its syndromes and ethnicity: prevalence, severity, co-morbidity and coping. Int J Epidemiol. 2009;38:1554–1570. doi: 10.1093/ije/dyp147. - DOI - PubMed

[10] Dinos S, et al. A systematic review of chronic fatigue, its syndromes and ethnicity: prevalence, severity, co-morbidity and coping. Int J Epidemiol. 2009;38:1554–1570. doi: 10.1093/ije/dyp147. - DOI - PubMed

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