Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): significant negative impact of Quality of Life of both patients and family members, by Esme Brittain
Our study was the first to look at the impact of ME/CFS on adult patients’ quality of life and that of their family members using validated questionnaires. Some studies have explored ME/CFS in paediatric patients and the impact on their mothers. They found that mothers experienced loss of monthly income and a marked impact on psychological health.
In another study siblings were asked to complete questionnaires and 9 siblings partook in a semi-structured interview. In the interviews, all siblings talked about restrictions on family life e.g. less holidays, don’t go out as a family as much. Some of the siblings spoke about the social stigma around ME/CF and how they had decided not to tell some of their friends about it because they may not understand. Emotional impact was also commonly talked about.
WAMES kindly posted information about our study on their website and social media pages. 39 patients/carers got in touch and wanted to get involved with the study, which was brilliant. We sent out a questionnaire to each patient (WHOQOL-BREF: World Health Organisation Quality of Life – Abbreviated version) and 4 questionnaires for their family members (FROM-16 – Family Reported Outcome Measures).
We had a 74% questionnaire response rate – this enabled us to achieve a robust and beneficial study.
Patients – WHOQOL-BREF
- Patients scored very low in the physical health section, indicating this had a greater impact on their QoL.
- There was a strong link between how the patients reported their QoL and how satisfied they were with their health i.e. the lower their health satisfaction, the poorer their QoL
Family Members – FROM-16
- Every family member reported some degree of impact on their QoL. Our average score for ME/CFS was much higher (=poorer QoL) than studies looking at other diseases such as cancer
- There was a strong link between the patients’ QoL and that of their family members i.e. the poorer the patients’ QoL, the greater the impact on their family members’ QoL
Our study has shown ME/CFS has a major impact on both patients’ and their family members’ quality of life. In fact studies of cancer patients and their families found their quality of life to be higher. Could this be because there is much more support from the NHS & charities for them? We hope clinicians will become more aware of this so that more appropriate support can be provided. Education and awareness are very important, but setting up support groups for family members could be a good start.
A larger-scale version of this study could be beneficial, as that could verify the findings and clarify the way forward for the NHS.