"Making it Personal": Managing Chronic Symptoms using Scientific Insights from N-of-1 Studies: ME/CFS

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is characterised by the cardinal symptom of post-exertional malaise (PEM). PEM is experienced as marked, rapid physical and/or cognitive fatigue, or exacerbation of another symptom(s), in response to minimal exertion. ME/CFS patients often report symptoms of chronic and disabling fatigue, as well as a range of other diverse symptoms, such as musculoskeletal pain, headaches, sleep problems and impaired cognitive function. ME/CFS affects 0.2-0.7% of the Australian population but as yet there is no known cause or cure for ME/CFS. ME/CFS has a significant impact on an individual’s function and quality of life and a substantial economic burden on the individual and wider society, including higher health care utilisation and loss of productivity.

N-of-1 methods

It is well-recognised that individuals with ME/CFS can vary widely in regards to the severity and particular cluster of symptoms they experience. However, research in this area has typically used a ‘group-based’ research design to study the disease and its potential treatments, which pays less attention to individual differences in symptomology, severity and experience. For example, the “gold standard” randomised controlled trial is often used to identify whether a specific treatment is effective for patients on average, and less information about whether a treatment is effective for an individual patient. N-of-1 methods involve repeated measurements of symptoms in an individual over time in order to draw conclusions that are specific to that individual. They can be used to evaluate how individual patients respond to potential treatments and to understand patterns and predictors of symptoms over time, which can be helpful for self-management of the condition.

Why do the study?

The current study uses N-of-1 methods to explore patterns and predictors of ME/CFS symptoms over time and provide personalised feedback about these data to participants. The information provided during the study will help to inform approaches for the management of symptoms and for future research using similar research methods to test treatments and interventions. The study has received ethical approval from the UQ Medical Faculty ethics committee.

Participating in the study

To be eligible for this study people must have a medical diagnosis of ME/CFS and be willing to complete brief questionnaires on a daily basis for 6 weeks.

To read more about this study please read the participant information sheet.