Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Impact on Quality of Life (QoL) of Persons with ME/CFS.

Nina L Muirhead, Jui Vyas, Rachel Ephgrave, Ravinder Singh, Andrew Y Finlay
Author Information
  1. Nina L Muirhead: Department of Dermatology, Buckinghamshire Healthcare NHS Trust, Amersham HP7 0JD, UK.
  2. Jui Vyas: Centre for Medical Education, School of Medicine, Cardiff University, Cardiff CF14 4YS, UK. ORCID
  3. Rachel Ephgrave: Patient Research Partner, Gloucestershire, UK. ORCID
  4. Ravinder Singh: Medical Research Council, Polaris House, Swindon SN2 IFL, UK.
  5. Andrew Y Finlay: Division of Infection and Immunity, School of Medicine, Cardiff University, Cardiff CF14 4YS, UK. ORCID

Abstract

: We previously reported on the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the QoL of persons with ME/CFS and their family members. Here, we present the findings of the impact on the QoL of individuals with ME/CFS whose family members did not participate in the survey. : A prospective multinational online survey was disseminated via patient charities, support groups and social media. Persons with ME/CFS completed the EuroQoL questionnaire (EQ-5D-3L). : Data were analysed from 876 participants from 26 countries who reported a health care professional diagnosis of ME/CFS. In total, 742 participants identified as female, 124 male and 10 preferred not to say. The mean age of the participants was 47 years (range 18-82), and the mean time to diagnosis was 14 years. The mean overall health status on a visual analogue scale for people with ME/CFS was 36.4 (100 = best health). People with ME/CFS were most often affected by inability to perform usual activities (n = 852, 97%), followed by pain (n = 809, 92%), impaired mobility (n = 724, 83%), difficulty in self-care (n = 561, 64%) and least often affected by anxiety and depression (n = 540, 62%). : The QoL of people with ME/CFS is significantly affected globally. There was no significant difference in quality of life compared with previously published data on those with ME/CFS who did have a family member complete the family member quality of life questionnaire (FROM16). Contrary to popular misconception, anxiety and depression are the least often affected areas in persons with ME/CFS who are most impacted by their inability to perform usual activities.

Keywords

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MeSH Term

Humans
Quality of Life
Fatigue Syndrome, Chronic
Male
Female
Adult
Middle Aged
Surveys and Questionnaires
Prospective Studies
Aged
Adolescent
Aged, 80 and over

Word Cloud

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