CFS/ ME patients experiences of physical activity
Research type
Research Study
Full title
A phenomenological study of experiences of physical activity in patients with Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis.
IRAS ID
212399
Contact name
Alan Batterham
Contact email
Sponsor organisation
Teesside University
Duration of Study in the UK
0 years, 2 months, 20 days
Research summary
Summary of Research
Chronic Fatigue Syndrome (CFS)/ Myalgic Encephalomyelitis (ME) is a disease that causes debilitating fatigue and a number of other symptoms including reduced cognitive ability, sore throat, tender lymph nodes and headaches. Further still the symptoms of CFS have been shown to worsen following stress such as exercise. However, research has demonstrated that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) are two interventions that could control and manage symptoms of CFS.
The evidence for the potential benefits of GET is still not clear, and further to this, what it still to be explored in more detail is how this patient group themselves perceive exercise and physical activity. Therefore, the aim of this study will be to explore CFS patient’s experiences of exercise and physical activity.
This is a qualitative study using a phenomenological approach. 8 participants will be invited to participate in a semi-structured interviewing lasting between 45 and 60 minutes. Questions will explore how patients perceived exercise prior to their illness and then explore how this may have changed since becoming ill. Questions will also explore how patients view physical activity and exercise programmes as a possible treatment for their condition. All interviews will be recorded and transcribed verbatim. Data analysis will involve the use of a Interpretive Phenomenological Analysis (IPA) to identify key themes across the interviews. John Franklin will conduct the initial analysis followed by a process of peer review with Alan Batterham, Greg Atkinson and Samantha Harrison. Patient Public Involvement will take place through a Patient Advisory Group that has been developed alongside this study. PPI will involve asking for volunteers from the local CFS/ ME charity to look over the analysed data to assess if this is an accurate reflection their experiences.
Summary of Results
: Four master themes were identified. 1. “I won’t let it beat me” describing how participants attempt to ‘hit it [ME/CFS] head on’ and “beat” the illness by attempting to maintain the same level of activity, despite this approach causing a worsening of symptoms. 2. ‘Losing sense of self’ portraying how the illness results in an inability to engage in activities which bring enjoyment, fulfilment and a sense of self. 3. ‘Hiding symptoms but seeking compassion’ illustrating the hidden nature of the illness which causes feelings of illegitimacy. 4. ‘Small wins and flexible approach’ describing the need to plan activities and despite meticulous planning the illness still “catches you out” which results in feelings of isolation and a sense of lost identity leading from an inability to fulfil previous roles. Alongside a desire to be more active and engage in more social activities there were feelings of frustration and grief when symptoms prevented this.
REC name
West of Scotland REC 3
REC reference
17/WS/0197
Date of REC Opinion
20 Oct 2017
REC opinion
Further Information Favourable Opinion