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https://www.mdpi.com/1648-9144/60/8/1215
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Impact on Quality of Life (QoL) of Persons with ME/CFS
Medicina 2024, 60(8), 1215; https://doi.org/10.3390/medicina60081215 (registering DOI)
Submission received: 31 May 2024 / Revised: 4 July 2024 / Accepted: 16 July 2024 / Published: 27 July 2024
(This article belongs to the Special Issue Advances in ME/CFS Research and Clinical Care: Part II)
Abstract
Background and Objectives:
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.
Materials and Methods:
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).
Results:
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%).
Conclusions:
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:
myalgic encephalomyelitis; chronic fatigue syndrome; quality of life
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Impact on Quality of Life (QoL) of Persons with ME/CFS
by
Nina L. Muirhead
1,†,
Jui Vyas
2,*,†,
Rachel Ephgrave
3,
Ravinder Singh
4 and
Andrew Y. Finlay
5
1
Department of Dermatology, Buckinghamshire Healthcare NHS Trust, Amersham HP7 0JD, UK
2
Centre for Medical Education, School of Medicine, Cardiff University, Cardiff CF14 4YS, UK
3
Patient Research Partner, Gloucestershire, UK
4
Medical Research Council, Polaris House, Swindon SN2 IFL, UK
5
Division of Infection and Immunity, School of Medicine, Cardiff University, Cardiff CF14 4YS, UK
*Author to whom correspondence should be addressed.
†These authors contributed equally to this work.
Medicina 2024, 60(8), 1215; https://doi.org/10.3390/medicina60081215 (registering DOI)
Submission received: 31 May 2024 / Revised: 4 July 2024 / Accepted: 16 July 2024 / Published: 27 July 2024
(This article belongs to the Special Issue Advances in ME/CFS Research and Clinical Care: Part II)
Abstract
Background and Objectives:
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.
Materials and Methods:
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).
Results:
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%).
Conclusions:
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:
myalgic encephalomyelitis; chronic fatigue syndrome; quality of life
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