Abstract

BackgroundMyalgic 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.MethodData 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.ResultsAll variables, with the exception of whether the patient had received a formal diagnosis, were significant predictors.ConclusionsRelationships 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.

Highlights

  • Myalgic Encephalomyelitis (ME) is a chronic condition whose status within medicine is the subject of on-going debate

  • In 2015, Healthwatch Trafford received a complaint from a person who identified as having Myalgic Encephalomyelitis (ME) concerning treatment from their General practitioner (GP)

  • Multinomial logistic regression requires a careful assessment of univariate and multivariate outliers, multicollinearity, and distribution of the error terms

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Summary

Introduction

Myalgic Encephalomyelitis (ME) is a chronic condition whose status within medicine is the subject of on-going debate. 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. In 2015, Healthwatch Trafford received a complaint from a person who identified as having Myalgic Encephalomyelitis (ME) concerning treatment from their GP (general practitioner). Healthwatch Trafford ran a patient experience-gathering project, by creating a detailed survey, designed to investigate, how key factors (i.e., length of time with ME, geographic location, trust in GP and gender) impacted upon individual patient relationships with their doctor. According to the Centres for Disease Control and Prevention (CDC) criteria [5] diagnosis of ME or CFS

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