Journal of IiMER Volume 13 Issue 1 Invest in ME Research Medical Education Education about ME has been one of the major objectives for Invest in ME Research. Dr Nina Muirhead and students at Cardiff University have been working on medical education. Invest in ME Research invited them to present poster presentations at the IIMEC14 conference in London. The studies demonstrate the following – 1) What is the Impact on Quality of Life of Family members with ME/CFS using the internationally validated QHOQUOL-BREF and FROM-16? Needless to say results show the negative impact of ME/CFS on family members is greater than any other medical condition. 2) What should medical students be taught about ME/CFS? This explores current teaching in 22 medical schools UK wide and uses qualitative information from patient surveys to make recommendations for not only what should be taught but how and when this could be delivered in the undergraduate medical school syllabus. 3) What is the role of the GP in care of ME/CFS patients in the community? This study draws together patient opinions in the form of 690 patient survey responses plus detailed ideas from qualitative analysis of telephone interviews of patients with a range of illness severity and duration. The patient voice is increasingly used in guideline development. We include here the abstracts for these presentations. The Impact of ME/CFS on the Family: Measuring Quality of Life (QoL) using the WHOQOL-BREF and FROM-16 Questionnaires Brittain EL, Muirhead NL, Finlay AY and Vyas J. ABSTRACT Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic condition Invest in ME Research (Charity Nr. 1153730) investinme.org Page 21 of 52 characterised by a multitude of symptoms, ranging from post-exertional malaise to cognitive difficulties. ME/CFS has been shown to significantly reduce patients’ quality of life (QoL) when compared to both healthy controls and patients with other chronic illnesses. To our knowledge, our study is the first to explore the impact of ME/CFS on QoL of both adult sufferers and their family members using the validated questionnaires: World Health Organisation Quality of Life - Abbreviated Version (WHOQOLBREF) and Family Reported Outcome Measure (FROM-16). The study information was posted on the website and social media pages of the charity WAMES (Welsh Association of ME & CFS Support). A total of 39 volunteers expressed an interest in participating in the study and were posted a questionnaire pack containing one WHOQOL-BREF and four FROM-16 questionnaires. People with ME/CFS completed the WHOQOL-BREF and up to four of their family members completed the FROM16 questionnaire. 29 participants returned the questionnaire packs (74% response rate), of which 5 were excluded due to incomplete data or not meeting the inclusion criteria. There was a negative effect on quality of life for both people with ME/CFS and their family members. People with ME/CFS, on average, scored substantially lower in the ‘Physical Health’ domain of the WHOQOL-BREF and scored highest in the ‘Environment’ domain. Conversely, the higher the FROM-16 score, the greater the adverse QoL impact on family members. FROM-16 total scores showed that the impact on QoL was very high (mean=19.86 SD=7.17 n=42) compared to previous studies of family members of patients with other diseases (mean=12.28, SD=7.47, n=120) and cancer (mean=11.75 SD=5.85 n=248). For people with ME/CFS: there was a strong correlation between health satisfaction and their perception of their QoL (rs=0.50, p=0.013) and none were ‘satisfied’ with their health nor rated their QoL as ‘good’. A significant correlation was found between the QoL of people with ME/CFS and their family members’ mean FROM-16 total score (rs=-0.41, p=0.047, n=24). This study has for the first time used FROM-16 to measure the impact of ME/CFS on the QoL of adults and their family members and highlights the need for additional larger-scale research into this area. The results of this study emphasise the importance of ensuring support is widely available to the family.

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