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, by Jui Vyas, Nina Muirhead, Ravinder Singh, Rachel Ephgrave, Andrew Y Finlay in BMJ Open 2022;12:e058128. [doi: 10.1136/bmjopen-2021-058128]
Research abstract:
Objectives
The aim of this study was to assess the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life (QoL) of people with ME/CFS and their relative or partner (family member).
Quality of life, the degree to which an individual is healthy, comfortable, and able to participate in or enjoy life events. (Britannica)
Design
A patient-partner, multinational, subject-initiated, cross-sectional online survey.
Setting International survey using ME/CFS charities, support groups and social media.
Participants
Participants were self-selected with recruitment via social media. Inclusion criteria were aged 18 years or over and reported diagnosis of ME/CFS by health professional. 1418 people with ME/CFS and their 1418 family members from 30 countries participated in the survey.
Participants with ME/CFS had a mean age of 45.8 years (range 18–81) and were predominantly women (1214 (85.6%) of 1418). Family members had a mean age of 51.9 years (range 18–87) and were predominantly men (women: 504 (35.5%) of 1418). 991 (70%) family members were partners of the people with ME/CFS.
Interventions
EuroQoL-5 Dimension (EQ-5D-3L), completed by people with ME/CFS, and Family Reported Outcome Measure (FROM-16) questionnaire, completed by family members.
EuroQoL-5 measures 5 dimensions: mobility; self-care; usual activities; pain/ discomfort; anxiety/ depression
Results
The mean overall health status on a Visual Analogue Scale for people with ME/CFS was 33.8 (0=worst, 100=best).
A Visual Analogue Scale (VAS) is one of the pain rating scales… often used in epidemiologic and clinical research to measure the intensity or frequency of various symptoms. (Physiopedia)
People with ME/CFS were most affected by ability to perform usual activities, pain, mobility, self-care and least impacted by anxiety.
For family members, the overall mean FROM-16 score was 17.9 (0=no impact, 32=worst impact), demonstrating a major impact on QoL.
Impact on QoL was significantly correlated between the person with ME/CFS and their family member (p<0.0001). Family members were most impacted emotionally by worry, frustration and sadness and personally by family activities, holidays, sex life and finances.
Conclusions
To the best of our knowledge, this is the largest study on the impact of the QoL of persons with ME/CFS and their family members. While open participation surveys are limited by selection bias, this research has revealed a significant worldwide burden of ME/CFS on the QoL of people with ME/CFS and their family members.
Unanswered questions and future research
Not all people with ME/CFS have a family member or partner to complete the FROM-16. Several individuals wrote to the research team explaining their isolation, difficulty maintaining family relationships and/or lack of empathy of family members. Further research is needed to understand the wider impact of ME/CFS on families and on individuals.
