An ‘Overwhelming Illness’

Abstract

The processes through which people learn to live with CFS/ME are poorly understood and have not been rigorously explored within the literature. Semi-structured interviews were conducted with eight women and analysed using interpretative phenomenological analysis. Participants initially described being 'overwhelmed' by CFS/ME. Attempts at seeking help were unsatisfactory and participants described feeling let down and disbelieved. Participants reacted to this by identifying types of 'self-help' and assertively taking more responsibility for their illness and its treatment. Acquiring social support and greater knowledge were key mediating factors in the emergence of control and acceptance. The relevance of the themes to existing research and the implications for clinical practice are considered.

Overcoming the barriers to the diagnosis and management of chronic fatigue syndrome/ME in primary care: a meta synthesis of qualitative studies

“…If a patient does not improve, practice nurses and GPs also report a lack of job satisfaction, and can distance themselves from the patient [19,23]. The breakdown of the GP-patient relationship can lead to a lack of empathetic care and patients can feel helpless and let down [7,19,28,29,35]. …”

“…Patients with experience of CFS/ME can act as counsellors to new sufferers [20,26]. Some patients also use complementary therapy or identify types of ‘self help’ [28]. The choice of therapy was often based on recommendations from support groups [20,26].…”

“…Personal experience challenges stereotypical and sceptical views, and provides understanding of the impact of the condition on quality of life. GPs are then able to offer support, and may seek the knowledge required to provide a diagnosis and encourage symptom management [26,28]. This finding illustrates that attitudes can be flexible.…”

“…This collaborative approach is therefore beneficial in the long term management of CFS/ME as it improves communication [7]. Furthermore, successful GPs recognised that the family or significant others are instrumental in helping or hindering management [22,28]. Health professionals should therefore engage with family members where possible, as without family support, patients can feel isolated and may struggle to manage their symptoms [22,27].…”

Functional level of patients with chronic fatigue syndrome reporting use of alternative vs. traditional treatments

“…Those previously diagnosed with CFS reported more CAM use than individuals with fatigue who were not diagnosed with CFS. In another study, Edwards and colleagues [10] conducted a qualitative survey to examine how CAM use aligns with self-care among individuals with CFS ( N=8 ). Participants reported feeling ‘let down and disbelieved’ when seeking help from physicians, and therefore may have taken more responsibility for their illness, self-care, and treatment by utilizing the use of CAM.…”