Journal of IiMER Volume 13 Issue 1 Invest in ME Research Understanding the Role of the General Practitioner in Caring for Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in the Community Allwright EG, Muirhead NL Background Patients with ME/CFS are reliant on their GP for a diagnosis and early management but also holistic support, particularly where secondary services are limited. There has been increasing recognition of the importance of the patient voice. This study aimed to gain a better understanding of the patient perspective of GP care of ME/CFS with a view to identifying ways of improving the patient experience. Methods Information was gathered from: 1) an online question answered by 690 members of the ME Association 2) 47 written responses to this question 3) ten semi-structured interviews with patients with a diagnosis of ME/CFS. Qualitative, thematic analysis of both the written feedback and interview transcripts was used to identify themes. Results The online question demonstrated that patients prioritised the importance of GPs having an understanding of the symptoms of ME/CFS in order to make a diagnosis. Five themes were identified from the online free text responses and nine themes from the interviews. These covered the role of a GP in diagnosing and managing ME/CFS; the patients’ perception of their GP’s knowledge of ME/CFS; the broader role of the GP with links to social care and support to claim Disability Allowances; and patients’ reports of the relationship between patient and GP. The data also supported the concept of having a designated healthcare practitioner, be it a GP, therapist or practice nurse, who could offer consistent care and support. Conclusion Participants believed that their GPs did not have sufficient resources or knowledge to best manage ME/CFS however this was deemed less important to patients than a willingness to listen and sympathise with the patient, to understand their individual experience and work in collaboration with them towards recovery. Overall, participants emphasised the perception that a supportive GP, who is honest and open with patients, can make a significant Invest in ME Research (Charity Nr. 1153730) impact, regardless of their ability to cure the patient; “you hope you have a supportive GP because he will help you, even if he can’t treat you, he will help you”. What Should be Taught to Medical Students about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? Lavery GE and Muirhead NL Introduction: The lack of understanding of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) amongst health care professionals has been shown to cause delayed diagnosis, misdiagnosis and harm to people with ME/CFS (PWME). There is a paucity of data surrounding teaching on ME/CFS in UK medical schools. A small study undertaken in 2012 demonstrated that UK medical students 'were unconfident and uncertain around their understanding of CFS/ME, held varying models of aetiology of the illness and had limited knowledge of the symptoms and suitable management strategies’. A larger study conducted in the USA showed that only 28 percent of medical schools met the curricula criterion for ME/CFS teaching. Methods: 1) A quantitative analysis examining current teaching on ME/CFS at UK medical schools was performed. All 34 undergraduate medical schools in the UK were invited to complete an online survey through the website 'SurveyMonkey’, 22 medical schools (65%) completed the survey by the deadline. 2) A qualitative analysis exploring PWME’s perceptions of important topics to teach medical students was subsequently performed. PWME were invited to respond to a post on the Welsh Association of ME & CFS patient charity website (WAMES), entitled “What should medical students learn about ME?”. Thematic analysis applied both manually and using NVIVO 11 software identified key themes. Results: 1) Medical schools were able to skip questions if the answer was unknown. Data from the survey showed that 11 of 19 medical schools include formal teaching on ME/CFS in their curricula, the majority of whom deliver this teaching in lecture format. Only 3 of 12 medical schools spend more than two hours teaching on the topic and 2 of 10 include clinical contact with PWME. Only 5 of 19 include question(s) on ME/CFS in formal exams. Most investinme.org Page 22 of 52

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