Chronic Fatigue Syndrome (CFS) or Myalgic Encephalitis (ME) is characterized by severe, disabling, medically unexplained fatigue that is not alleviated by rest and lasts at least six months
[1, 2]. Patients complain of concentration or memory problems, disturbed sleep, weakness and pain, and symptoms differ between patients
. CFS/ME is associated with a high level of distress and disruption to patients lives, and is costly in terms of both health service utilization and economic burden to patients and their families
Diagnosis of CFS/ME is formulated through the patient history and exclusion of other medical causes and psychiatric problems
. Patients have described how receiving a diagnosis of CFS/ME is the single most helpful event for them in managing their condition
. NICE guidelines also emphasise the importance of an early diagnosis
. However, in reality this rarely happens, and some GPs remain sceptical about the diagnosis
[7–10]. In a recent primary care treatment trial
, the mean time from onset of symptoms to diagnosis was 3.6 years. It is likely therefore that at any one time a number of individuals are awaiting diagnosis, suggesting the UK prevalence of CFS/ME of 0.2-0.4%
 is likely to be a low estimate.
Despite NICE recommendations for early treatment and developing tailored care-packages
, this rarely happens in practice
. CFS/ME is not incentivised as part of the Quality and Outcomes Framework (QOF), a pay-for-performance scheme that financially rewards GP practices for achieving a number of clinical and organisational indicators
. The complexity of the condition and lack of incentives can therefore mean that the diagnosis and management of symptoms of diseases not included in the QOF can be overlooked
[15, 16]. For example, 65% of the Action for ME members surveyed
 report never receiving any treatment. Even when a diagnosis has been given, many primary care health professionals feel ill equipped to deliver treatments
[18, 19]. The need for better communication and education on the management of CFS/ME has been consistently highlighted
[18, 20, 21]. In order to meet NICE guidelines, more usable and accessible educational resources are needed for patients and their primary care team
. There is also a need to develop culturally sensitive information as Bhui et al.
 report that ethnic minority groups may have a higher prevalence of CFS/ME than White groups, but remain undiagnosed and untreated.
This paper presents the initial phase of the METRIC (ME Education, Training and Resources In Primary Care) study that links with the Medical Research Council framework for complex interventions
. The study aims to develop an education and training intervention to support practitioners in making an early diagnosis of CFS/ME and supporting patients in the management of their symptoms. Patient and carer perspectives were integral to the development of the resources, with input directly into the research management group, patient involvement groups and qualitative interviews.