culture + environment creating health + wellbeing engaged research

Rebecca Johnson Bista

PhD Student

Academic background

I have a background in both humanities and social sciences which underpins my transdisciplinary approach. For my first degree I studied English at Christ Church, Oxford. I have two masters degrees: an MA in South Asian Area Studies from the School of African and Oriental Studies, London and an MPhil in Women’s Studies from Trinity College, Dublin. Subjects I’ve covered span from language studies (Urdu) through film (Hindi cinema), psychology, anthropology, international development, law, and employment to medical sociology, politics (South Asian and Middle Eastern), and literature.

Before joining the Wellcome Centre as a PhD student in 2018 my career included working for Routledge (academic publishing), the Labour Party (at HQ for 1997 general election) and the UN refugee agency (UNHCR) in Kathmandu, Nepal. I’ve also been a teacher in Egypt, and an employment/management editor and journalist published in the Irish Times and the Financial Times as well as in business and HR magazines such as People Management. For the last nine years I have been ill and semi-housebound with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, which has led to the topic of my research.

Career highlights

Career and life have always been intertwined in my experience. Highlights include attending the Labour victory party in the Royal Festival Hall after an intense few months’ campaign organising for the 1997 election; making an important contribution to the 1990s’ abortion debate in Ireland through my MPhil research and leader articles on the contest over ‘rights’ in the Irish media; receiving an award for feature writing at the 2000 Work World Media Awards; participating in a community listening project in New York to inform plans for rebuilding Ground Zero after 9/11; and helping in the work to support and resettle Bhutanese refugees left languishing in camps in Nepal for more than 15 years.

Becoming one of the first cohort of WCCEH PhD students is another significant milestone that combines life – in the form of my experience of chronic illness – with work – research on the cultures of ME/CFS.

My research

Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS), remains at present an ‘unexplained illness’. Currently without confirmed biomarkers for diagnosis, its aetiology and processes remain mysterious, its epidemiology difficult to define, its diagnostic criteria contentious and its treatments even more hotly debated and mired in conflict. The impacts of its chronicity – often lasting decades or a lifetime – and of its uncertain status on the lives, identities and relationships of patients and their families are still poorly understood and there are as yet no culturally focused studies of contemporary ME/CFS in aesthetic production, media and popular discourse. Even its relationship to the historical disease label ‘neurasthenia’ is contested and snared in debates around ‘hysteria’, psychosomatics, and pathologies of gender, and the divisions between psychiatry and ‘physical’ medicine.

However, the next five years could prove to be something of a tipping point in interest and progress in ME/CFS research. There is a growing body of biomedical research coming on-stream, including ‘big data’ studies, identifying potential ME/CFS biomarkers for the first time. As of September 2017, substantial NIH grants have been awarded in the US for breakthrough biomedical studies and the establishment of centres of research excellence on ME/CFS. In 2014 the NIH ‘Pathways to Prevention’ workshop on ME/CFS stressed the importance of studying aspects of individual identity and relationship, perceptions, communication and stigma, to combat the current ‘disconnect’ in understandings between patients, researchers and clinicians – elements of ME/CFS which my research hopes to explore.

My research aims to unpick the ‘messy’ and ‘political’ aspects of ME/CFS cultures and some of their historical bases and seek new forms of evidence that could be used to bridge the gaps between different conceptions and understandings of ME in part through examining narratives of ME/CFS written by patients, practitioners and others. I will also be engaging with patients and patient organisations. In trying to pinpoint some of the disconnects in understanding I will be looking at coherence – and lack of coherence – in narrative and discursive constructs around ME/CFS, including which aspects of existing frameworks are valorised and ways in which patients attempt to make sense of their condition and form a coherent illness identity through life-writing and other narratives.