Fatigue is a common symptom, most people will relate to it and know what is meant by the term, synonyms of which are tiredness, weariness, exhaustion, overtiredness, drowsiness, somnolence, lethargy, sluggishness, lassitude, and so on. It is a feature of many health conditions, including cancer, stroke, multiple sclerosis (MS), lung disease, rheumatoid arthritis, anxiety, heart failure, and so on.

ME/CFS affects approximately 250,000 people in the UK ; fibromyalgia is estimated to have a worldwide prevalence of 2% (Royal College of Physicians 2022).

According to the Office of National Statistics (2022), at the time of writing, of the 2.1 million people (3.3%) of the UK population with self-reported Long Covid, 1.1 million (52%) had Covid at least one year previously and 507,000 (24%) at least two years previously. Long Covid symptoms adversely affected the day-to-day activities of 1.6 million people (76% of those with self-reported Long Covid), with 333,000 (16%) reporting that their ability to undertake their day-to-day activities had been ‘limited a lot’. Fatigue continued to be the most common symptom reported as part of individuals’ experience of Long Covid (70% of those with self-reported Long Covid), followed by difficulty concen- trating (45%), shortness of breath (42%) and muscle ache (42%).

The fatigue we are talking about here is not tiredness; it is sometimes described as ‘malaise’, defined in the Merriam-Webster online dictionary as ‘an indefinite feeling of debility or lack of health often indicative of or accompanying the onset of an illness’.

‘Poorly understood’ is repeatedly reported when considering the fatiguing elements of these health conditions. Treatments are developed to improve the underlying cause of the condition, and at best this work hopes to improve the fatigue by tackling the underlying disease process. In reality, fatigue is unlikely to be measured a there is no medical specialism in fatigue, no hospital department specific to it.

The ME Association describes ME/CFS:

• ME/CFS is recognised as a post-viral fatigue syndrome. It is a long-term, multi-system disease that can have a devastating impact on functional ability and quality of life

No effective drug treatment has yet been developed, and full recovery is rare, but symptoms can stabilise and improve over time with careful management and support

Coming to a diagnosis of ME/CFS, fibromyalgia or long covid is difficult as, so far, there are no biomedical markers or tests or clarity about the mechanisms of these conditions, so it is not possible to treat the underlying cause medically. After a lot of inconclusive investigations, people are often told they need to ‘learn to live with it’. Addressing practical concerns (and empowering people to address them or support by advocating for them) needs to be embedded in the approach. Specialist services (where they exist) support people work out what pacing involves and provide support with the emotional and practical challenges that can arise.

A mindfulness-based approach came from conversations with patients who had been through self-management programmes to help people manage but who were struggling with the reality of ‘living with it’. Several people told us they found mindfulness useful, so we instigated this approach personally and then worked with small groups of patients who were keen to try it out using the MBCT and MBSR programmes as they were then published.

After several years of running mindfulness groups, and some evaluation, the programme developed. We identified there was a particular nuance to the practices and adaptations to delivery. For example, there was a need to focus on using the potentially restful nature of mindfulness practice by learning to ‘stop’ or ‘pause’. This included emphasising the unwinding of tension in the body and developing a compassionate awareness. This has enabled people to experiment with changing their approach to activity and rest.

The information in the programme has been adapted to manage fatigue, and the sessions are structured to be accessible to a range of cognitive and physical abilities. The fluctuating nature of the conditions means needs can vary from session to session. This is reflected in a choice of length of practice; design and content and choice of handout and the ways in which people can physically access the group.

Mindfulness programmes include gentle movement, the mindfulness for fatigue programme includes gentle inquiring movement that has been developed by physiotherapists who specialise in fatigue and pain and have a lived experience of fatigue.

Acknowledging the fluctuating nature of the condition means considering how much activity is possible, sometimes resulting in a setback which requires a prolonged period of recovery. Mindfulness provides a way for someone to acknowledge how they are, explore what is going on and investigate what might be required in this situation.

This inquiry is key to the approach but takes gentle practice and we recommend people have access to a therapist who understand the nuances of the condition to support if it becomes overwhelming. By gently turning towards, other ways of being can emerge.

Rhonda Knight lives with ME/CFS and describes this process in her chapter “from doing to being” in Mindfulness based therapy for fatigue:

At the end of the programme, I was able to accept that a setback is likely to be part of the course, but I didn’t need to beat myself up about it. After all, I am living with a chronic condition and I plan to live as well as possible with it, rather than the continual daily fight, and to be mindful of my fatigue, pain, emotions and thoughts during this time. Another strategy was to plan to consider positive events that occurred each day during this time to balance my tendency to sink into the depths of despair.

Making mindful decisions was becoming more of a habit in my daily life as the questions I so frequently heard on the guided meditations often arose when

I felt that I was struggling in a situation:

‘What do I need to do right now?’

‘How can I best look after myself right now?’

‘What does my body need now?’

I personally have a strong belief (and concern) that both mindfulness and self-management need to be aware of a ‘self-improvement agenda’ that puts all the work onto the person who is struggling. There needs to be a contextual approach that works with the social and economic situation – for example, if someone is struggling to hold on to a job and manage a family, then ‘self-management’, never mind meditation without explicitly addressing this, can make things harder.

Mindfulness can be made bespoke to the person and for the approach to be useful and alive. Supporting people with the timing and type of practice makes mindfulness accessible and supportive to these conditions and how life is approached can change.

Therapists wanting to use this approach are encouraged to learn the principles of activity management and mindfulness for themselves as they explore the awareness with people living with fatiguing health conditions.

Please sign up to the mindfulness for fatigue newsletter that is hosted on substack for up to date information - you can find this at the bottom of this page.