Let’s talk about Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a complex long-term condition primarily characterised by emotional, mental and physical fatigue. Despite the prevalence of CFS/ME in the UK population being estimated to around 0.4% (National Institute for Health and Care Excellence, 2017), equating to around 260,000 people, it has only relatively recently gained widespread recognition as a genuine and distinguishable illness in its own right.
Whilst extreme tiredness remains the primary symptoms of CFS/ME, the NHS also highlights that additional symptoms may include:
- sleeping problems
- headaches
- dizziness
- muscle or joint pain
- problems concentrating, thinking or remembering
The severity of one’s symptoms are likely to fluctuate throughout the day, although it is common for these to worsen following a period of physical, mental or emotional effort. This is a phenomenon known as post-exertional malaise, and can occur following even minimal bouts of effort. The worsening of symptoms can happen immediately or up to 72-hours after exertion. As greater awareness continues to be directed towards CFS/ME, the impact of its symptoms on patient’s quality of life is becoming clearer; research by Nacul and colleagues (2011) concluded that those with CFS/ME experience, on average, greater disability than those with Type 2 diabetes, congestive heart failure, back pain or sciatica, lung disease, osteoarthritis, multiple sclerosis and even many cancers.
According to a weighted analysis conducted by the ME Association in 2020, the total cost of CFS/ME to the UK economy in 2014/15 was at least £3.3 billion. However, it should be noted that this analysis was unable to capture all relevant costs, including productivity loss amongst carers and presenteeism, and so it is anticipated that the true cost is actually much higher.
Despite the potentially debilitating symptoms of CFS/ME and the clear economic impact, research into the condition remains relatively limited. However, utilising more generalised research, we can acknowledge that physical activity is known to improve the health and quality of life for people living with an abundance of chronic diseases (Blair, 2009), with research demonstrating that detrimental physiological implications of avoiding activity include reductions to our general health and wellbeing, reduced muscle strength and a limited capacity to exercise. Further studies also suggest that there is a damaging cyclical relationship here, whereby increased periods of physical inactivity often result in the condition worsening or as a catalyst for other co-morbidities to develop (Wesseley et al., 1989).
However, the complexity of the condition becomes clear when you consider how opposing studies demonstrate that a continual increase in physical activity can instead lead to negative health outcomes in these populations. This is extremely significant and emphasises that, due to the nature of this unique condition, increasing physical doesn’t necessarily have to be the goal. In fact, careful monitoring and optimising of physical activity through realistic goals and pacing is likely to be the most effective method of avoiding over-exertion and maintaining a sustainable level of activity.
One way to help those with CFS/ME understand their physical activity and consequential energy expenditure is to shift the narrative away from considering traditional exercise as the sole determinant of physical fatigue. Instead, taking a multi-dimensional approach, that is viewing activity across multiple dimensions ranging from non-sedentary time, through moderate activity to vigorous activity, ensures that the totality of physical activity is captured. This enables those with CFS/ME to gain an understanding of the relationship between their everyday activities and resultant impact on physical energy expenditure. In the context of CFS/ME, understanding how physical activity impacts on energy balance, and how to maintain a level of movement within their energy envelope, is key to self-management.
The unique KiActiv® Health platform delivers analysis of your physical activity in the context of your own health, with our valuable, wearable data providing a personalised understanding of your condition to empower authentic choice and self-management. Concurrently, KiActiv® Health allows you to model and assess the impact of lifestyle changes on your energy levels, affording you a more detailed exploration of your personal routines and their relative impact. Ultimately, optimisation of physical activity is vital to ensure that every movement you make matters, particularly in those with CFS/ME, helping you to retain control over your day-to-day energy levels and live a healthier, happier life!
