Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 Jul 27;60(8):1215.
doi: 10.3390/medicina60081215.

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

Nina L Muirhead  1 , Jui Vyas  2 , Rachel Ephgrave  3 , Ravinder Singh  4 , Andrew Y Finlay  5
Affiliations

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

Nina L Muirhead et al. Medicina (Kaunas). .

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: chronic fatigue syndrome; myalgic encephalomyelitis; quality of life.

PubMed Disclaimer

Conflict of interest statement

AYF is joint copyright owner of FROM-16, a family member was deputy chair of the NICE ME/CFS guideline committee. Outside of this study, Cardiff University receives royalties from some use of FROM-16: AYF receives a share of these under standard university policy. NLM is a director of Doctors with ME, expert witness for NICE NG206 2021 guidelines on ME/CFS education, former member of ME education working groups ICANCME (Canada), Forward ME and the Centre for Solutions (USA). NLM has authored an online e-learning module on ME/CFS and has received consultancy fees from Learn about ME Project and Ono Pharmaceuticals as well as honorarium from GW4 ME/CFS Carers Project. RE is a member of the Patient Advisory Group to the ME Research Collaborative (MERC PAG), a member of the ME/CFS Friendship Group in Gloucestershire, was a workshop participant in the James Lind Alliance ME/CFS Priority Setting Partnership, a supporter of Action for ME and The ME Association and is both a patient with ME/CFS and a family member of a patient with ME/CFS. JV and RS have no conflicts to declare.

Figures

Figure 1
Figure 1
Participant numbers. Flow diagram demonstrating the basis for participant inclusion/exclusion from the analysis of the study and previously published data (greyscale). New data shown in bold show the remaining 876 people with ME/CFS identified for analysis. EQ-5D, Euroquol 5 Dimensions; ME/CFS: myalgic encephalomyelitis/chronic fatigue syndrome; VAS, visual analogue scale.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

References

    1. Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis and Management. National Institute for Health and Care Excellence (NICE); London, UK: 2021. Guideline NG206 N.
    1. Chang C.-J., Hung L.-Y., Kogelnik A.M., Kaufman D., Aiyar R.S., Chu A.M., Wilhelmy J., Li P., Tannenbaum L., Xiao W., et al. A Comprehensive Examination of Severely Ill ME/CFS Patients. Healthcare. 2021;9:1290. doi: 10.3390/healthcare9101290. - DOI - PMC - PubMed
    1. Sommerfelt K., Schei T., Angelsen A. Severe and very severe Myalgic encephalopathy/chronic fatigue syndrome me/Cfs in Norway: Symptom burden and access to care. J. Clin. Med. 2023;12:1487. doi: 10.3390/jcm12041487. - DOI - PMC - PubMed
    1. Vyas J., Muirhead N., Singh R., Ephgrave R., Finlay A.Y. Impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life of people with ME/CFS and their partners and family members: An online cross-sectional survey. BMJ Open. 2022;12:e058128. doi: 10.1136/bmjopen-2021-058128. - DOI - PMC - PubMed
    1. Rabin R., Charro F.D. EQ-5D: A measure of health status from the EuroQol Group. Ann. Med. 2001;33:337–343. doi: 10.3109/07853890109002087. - DOI - PubMed

LinkOut - more resources