Myalgic Encephalomyelitis (ME) is a chronic condition whose status within medicine is the subject of on-going debate. Some medical professionals regard it as a contentious illness. Others report a lack of confidence with diagnosis and management of the condition. The genesis of this paper was a complaint, made by an ME patient, about their treatment by a general practitioner. In response to the complaint, Healthwatch Trafford ran a patient experience-gathering project.
Data was collected from 476 participants (411 women and 65 men), living with ME from across the UK. Multinomial logistic regression investigated the predictive utility of length of time with ME; geographic location (i.e. Manchester vs. rest of UK); trust in GP; whether the patient had received a formal diagnosis; time taken to diagnosis; and gender. The outcome variable was number of GP visits per year.
All variables, with the exception of whether the patient had received a formal diagnosis, were significant predictors.
Relationships between ME patients and their GPs are discussed and argued to be key to the effective delivery of care to this patient cohort. Identifying potential barriers to doctor patient interactions in the context of ME is crucial.
A significant proportion of ME suffers reported unsatisfactory relationships with their GP. This finding indicated that ME patients experience a troubled relationship with their primary health contact. Indeed, approximately half of the surveyed participants did not trust their GP. Trust was only evident within the monthly GP visit group. These are important outcomes because lack of trust can negatively affect the number of times patients visit GPs and condition management [17, 21, 27]. One strategy with the potential to address this issue is for GPs to cultivate a sense of “we-ness”. Shared GP/ME patient group membership and common goals may facilitate respect and trust [4, 24]. Building rapport with this cohort is vital.
Potential barriers to positive in-group inclination are depersonalization and stereotyping. From the perspective of GPs, the ME patient group are problematic because ME diagnosis is often considered contentious [15, 24], prevalence is low, and, importantly, ME is absent from the Quality and Outcome Framework . These factors combine to make ME management and treatment challenging and time consuming [15, 16, 20]. Within the present study, formal diagnosis and time to diagnosis had little effect on ME patient visits. The notable exception was the 3–6 month category, where diagnosis was associated with increased GP visits in the 5–6 a year and monthly categories. These results suggest this is an important period for diagnosis. Subsequent research should examine this further.
Moreover, the groups that patients understand themselves as belonging to potentially influences symptom appraisal/responses, health related norms/behaviours, coping, social support and clinical outcomes [22, 23]. Thus, from a health and well-being perspective, it is clear that individual’s relationships, and identification, with their medical and social care providers are of vital importance. Indeed, for people living with chronic conditions, the GP relationship is a crucial factor [4, 18, 19]. As such, the functionality of the doctor patient interaction is fundamental to individual well-being. Mutual respect is a core facet at the heart of this relationship [3, 17].
Illustratively, St Claire and Clucas  observed that patients reported several affirmative outcomes when they perceived their doctor as respectful (i.e., greater satisfaction, intention to adhere to advice, and inclination to revisit). Thus, positive patient regard not only enhances the doctor and patient interaction, but also improves patient prognosis by reducing symptoms and facilitating healthy behaviours. In this context, communication and skills training may help to enhance GP interaction with ME patients. Succeeding studies should assess this area.
The results of the present study also revealed a negative relationship between length of ME and frequency of GP visits, as the length of the condition extended patients reported fewer GP visits. One way to understand this is to build conceptually on a recognition of the importance of communication. Consistent with the positive link between trust and GP visits [3, 17], De Carvalho Leite et al.  reported that inadequate communication between patients and professionals was often a barrier to care. With a significant proportion of English GPs reported as being sceptical of ME as a diagnosis [3, 14], it is not surprising that patients frequently report their attempts to access services as ‘exhausting, demoralising and isolating’ [15, 20, 28].
In line with this qualitative literature, our findings reveal that over time ME patients engage less with medical practitioners. Although, the reasons for this are currently unclear, this finding suggests that improved doctor and ME patient communication and monitoring is advisable. This would help to track number of appointments attended, frequency, and points at which attendance cease. Maintaining and engaging with treatment is vital to condition management and well-being. A general remedy for ineffective communication is to provide empathic, personalised and co-ordinated support from health and social services [3, 17, 28]. Additionally, when ME patients stop visiting their GP it is recommended that reasons for non-attendance are sought. Collation and consideration of such feedback could usefully inform subsequent investigation.
This study found also that gender was an important factor. Specifically, women were more likely to visit their GP than men. Indeed, analysis of gender revealed that women were more likely to visit their GP more than 5 times a year (40.3%) compared with men (23.1%). Psychology has long recognised the importance of gender [6, 29, 30] which is most usefully considered as a function of social and developmental factors rather than as an essentialist actuality. Sandberg, Pasterski, and Callens,  for example argued that different psychosexual developmental experiences manifest in women as a sense of self that is relational, whereas men’s sense of self is more independent and less contingent on interpersonal connection [5, 23, 30].
Gender differences in health service access have received relatively little attention in the UK. When studies evaluate gender, they focus typically on women’s issues, particularly male privilege [6, 32]. The present article highlighted the fact that men also possess important healthcare needs. Hence, effective provision needs to recognise the needs of all gender groups. Haslam  argues that, from clinical and health perspectives, in order to engage usefully with identity (including gender) researchers need to work with an individual’s sense of self rather than across it. Study findings recommend that health care professionals would benefit from increased awareness of this issue.
One mechanism through which gender differences may arise is stereotyping. Stereotyping defines appropriate and relevant behaviours within particularly contexts and guides expectations [30, 34, 35]. For example, the typical male stereotype implies that a person has psychological capability, goal-orientation, self-confidence as well as social dominance [30, 35]. This implies that men are resilient . Moreover, the male stereotype positions ‘real’ men as being invulnerable [29, 35].
Importantly this process of categorization links to existing social relations, [22, 23, 36], including relationships with medical service providers [4, 6]. The norms of stoicism and control associated with masculinity often prevent men from seeking healthcare where they believe they risk lapsing into a passive and/or ‘feminine’ sick role that is associated with weakness . The argument presented in this paper, driven by the finding that men are less likely to be engaged with their GP, is that medical practitioners need to engage with men, recognize and harness these male identities/stereotypes and norms by working with, rather than across them [4, 22, 33].
A final important variable was geographic location. Isakson et al.  contend that when there are preventable health inequities between people, the distribution of health resources that shape the inequity require consideration. Such questioning is the raison d’être of Healthwatch networks. Indeed, Healthwatch Trafford commissioned this patient experience gathering exercise because of reported patient issues within the Greater Manchester region. Specifically, they were keen to determine whether there were variances in ME treatment compared with the rest of the UK. Results revealed a significant difference. Greater Manchester residents living with ME visited their GPs more frequently than those living in the rest of the country did. Future research should attempt to unpack this finding in order to identify what this might be.