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

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).

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.

Results: The mean overall health status on a Visual Analogue Scale for people with ME/CFS was 33.8 (0=worst, 100=best). 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.

Keywords: neurology; public health; social medicine.

Figure 1

Participant numbers. Flow diagram demonstrating the basis for participant inclusion/exclusion from the analysis of the study. Following this protocol, 1418 patients with ME/CFS and their corresponding family members were identified for analysis. EQ-5D, EuroQoL 5 dimensions; FROM-16, Family Reported Outcome Measure; ME/CFS, myalgic encephalomyelitis/chronic fatigue syndrome; VAS, Visual Analogue Scale.

Figure 2

EQ-5D health profile. The EQ-5D health states of the person with ME/CFS. (A) Patients were asked about the following five dimensions, each representing a different aspect of health; usual activities, pain/discomfort, mobility, self-care and anxiety/depression. Each dimension has three levels (1=no problem, 2=some problem, 3=extreme problem), with the patient indicating their health state by identifying the level representative of their individual condition. (B) A graph showing the range of patient answers as they were asked to rate their health on a Visual Analogue Scale (VAS), with 0 representing worst imaginable health state and 100 best imaginable health state. The average VAS score of patients with ME/CFS was 33.7. EQ-5D, EuroQoL 5 dimensions; ME/CFS, myalgic encephalomyelitis/chronic fatigue syndrome.

Figure 3

EQ-5D value of ME/CFS versus population norm. The EQ-5D results of patients with ME/CFS compared with the UK population norm. (A) The average EQ-5D value of varying age groups for participants with ME/CFS of our study, compared with the UK population. (B) The percentage of participants with ME/CFS who reported a problem (level 2 or 3) for each of the EQ-5D dimensions as compared with the UK population norm. EQ-5D, EuroQoL 5 dimensions; ME/CFS, myalgic encephalomyelitis/chronic fatigue syndrome.

Figure 4

Emotional and personal and social domain FROM-16 score. FROM-16 score range for the family members of participants with myalgic encephalomyelitis/chronic fatigue syndrome in (A) the emotional domain (max score 12) and (B) the personal/social domain (max score 20), with higher scores indicating greater impact on the family members quality of life. FROM-16, Family Reported Outcome Measure.

Figure 5

Overall FROM-16 score. Total FROM-16 scores for the family members of participants with ME/CFS. (A) Family members were asked about different aspects of their lives. Each question had three responses (0=not at all, 1=a little, 2=a lot). Responses have been sorted from the most impact on family member lives to the least, in both the emotional and personal domains. (B) The FROM-16 score range of family members, with 0 representing no impact on family member quality of life and 32 the greatest impact of patients ME/CFS on family members quality of life. The average score in this study was 17.93 out of a possible 32. FROM-16, Family Reported Outcome Measure; ME/CFS, myalgic encephalomyelitis/chronic fatigue syndrome.

Figure 6

Correlation of FROM-16 scores with VAS and EQ-5D values. Correlation of total FROM-16 scores with (A) VAS health state of patients and (B) the EQ-5D values of patients. (A) Scatter plot illustrating the relationship between total FROM-16 scores and patient EQ-5D VAS. (B) Scatter plot illustrating the relationship between total FROM-16 scores with the EQ-5D values of patients. The solid lines represent the linear fit of data. Figures shows the p value and R value as analysed by Spearman’s rank correlation test. EQ-5D, EuroQoL 5 dimensions; FROM-16, Family Reported Outcome Measure; ME/CFS, myalgic encephalomyelitis/chronic fatigue syndrome; VAS, Visual Analogue Scale.