Quality of life is the degree to which an individual is healthy, comfortable, able to complete the tasks of daily living, and to enjoy life events. It is defined by the World Health Organisation as:
“An individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns”
Research in Australia – published in 2020, unsurprisingly found that “ME/CFS has a profound and negative impact on health-related quality of life”.
More recently, researchers based at Cardiff University – alongside those with lived experience of ME/CFS, conducted a study to explore how ME/CFS impacts quality of life.
The team used an international online survey – distributed through ME/CFS social media groups between December 2020 to the end of March 2021, to collect information from people with ME/CFS and a family member – a relative, or their partner.
The research team have published two papers based on this survey:
- One – published in May 2022, which describes the results for 1,418 people with ME/CFS and their family member.
- Another – published in July 2024, which reports the findings from 876 people with ME/CFS whose family members did not participate in the survey.
Overall, results show that ME/CFS has a significant burden on both people with ME/CFS and their family members.
Interestingly, findings did not show any difference in the quality of life between those with ME/CFS whose family members completed the questionnaire and those with the disease who did not have a family member complete the questionnaire.
The main factors impacting quality of life for people with ME/CFS were problems performing their usual activities, increased levels of pain, issues with mobility, and problems with self-care such as washing and dressing themselves. Importantly, for people with ME/CFS, the section in the questionnaire related to anxiety and depression was the least affected.
For family members, their relative’s ME/CFS had a significant impact on emotions – particularly increased worry, feelings of frustration and heightened levels of sadness. Personal and social factors were also impacted including the effect of ME/CFS on family activities and holidays. Notably, it was found that generally, the worse the quality of life of the person with ME/CFS, the worse the quality of life of the family member.
Strengths of the research
The authors recognise several strengths of the study:
- The survey was international and had respondents from 26 countries.
- There number of respondents was large.
- Before the survey was distributed to potential participants, it had been trialled to ensure that those who are more severely affected were able to take part.
- This research was co-produced – done in a way which enables people who use health and care services, carers, and communities to work together with researchers in equal partnership. In this study, the researchers and people with ME/CFS worked together from the outset of the research – including the design of the project, and the application to the ethics committee.
- When done appropriately, co-produced research ensures that the voices of those with lived experience of a disease – such as ME/CFS, are represented. UK research and Innovation (UKRI) state that “Involving individuals with a stake in the project who are not researchers can enhance the quality of the research and help it to bring about positive change for society and the economy”.
Limitations of the research
Also acknowledged by the authors were several limitations of the research, including:
- The survey was advertised through social media which means that those who do not use social media may not be represented in the study findings.
- Respondents to the survey were mostly from the UK – although there were participants from other countries, the sample is not likely to be representative of all people in the world with ME/CFS.
- Additionally, most of the participants were English speaking, and further information on ethnicity was not collected.
- Information on the reasons why family members did not complete the questionnaire was not collected – However, the researchers state that “many individuals with ME/CFS who were participating in the study contacted the research team directly to explain their illness had resulted in isolation and lack of support”.
Summary
The findings from this research suggest that ME/CFS has a negative impact on quality of life for both those with ME/CFS, and for their family members. More research is needed to assess what support could be put in place to improve quality of life for those living the disease – and for those providing care and support for them. The results also highlight that for many people with ME/CFS, the illness had resulted in isolation and lack of support meaning that they did not have a family member to complete the questionnaire. In their discussion, the authors state that:
“ME/CFS often results in isolation, prejudice, disbelief and stigma related to family, friends, health and social care professionals, and teachers lack understanding of the disease”.
