Research abstract:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is associated with physical, cognitive and emotional challenges, and much research suggests that mindfulness-based interventions (MBIs) can be helpful for these difficulties. It is reasonable to assume that living with ME/CFS influences how people experience MBIs.
However, existing literature provides little insight into what it is like to attend an MBI if experiencing ME/CFS and thus there is a paucity of information to guide intervention. The current research aimed to elucidate this experience by applying Interpretative Phenomenological Analysis to eight interview transcripts.
Four master themes – ‘The gift of mindfulness’, ‘Struggling with doubts and understanding’, ‘The vulnerable self’, and ‘Healing relationships’ – emerged.
Individuals gave complex reports of MBIs which encompassed both positive and
negative accounts. Throughout these accounts, ME/CFS appeared at the forefront of individuals’ perceptions as if it were a lens they viewed their experiences through. For some, mindfulness gifted acceptance, ways of self-soothing and methods of regaining control. Many participants struggled with mindfulness however, fighting with their
own internal barriers and finding the guidance they were given confusing.
Being at the MBIs seemed to automatically place individuals in a vulnerable position. Participants reported that it was essential for them to ‘be on guard’, to monitor their activity and environment in regards to illness exacerbation. Indeed, many individuals seemed to expect the worst from the MBIs, particularly from the attitudes of their course peers and facilitators.
In contrast to participants’ expectations, individuals commonly reported that their facilitators and peers understood their 15 conditions and experiences. This sense
of being validated and of belonging was reported to be therapeutic. Moreover, relationships with others on the course were found to elicit a sense of hope and helped individuals engage with the mindfulness material.
Best practice recommendations include reducing participants’ anxieties and managing expectations around MBIs as well as harnessing the power of the group. Future research might further explore discourses around MBIs, the group dynamics involved, hope, demographic differences, and the potential utility of Acceptance and Commitment
Therapy for ME/CFS.
A pluralistic approach to medically unexplained symptoms, by Jennifer Ellen Dayes, City University London, September 2014. Online: May 5, 2015
