Rebecca Johnson Bista - PhD Student

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.

My academic background spans the humanities and social sciences. My first degree was in English, at Christ Church, Oxford. My initial masters degree was an MPhil in Women’s Studies from Trinity College, Dublin, which was the only women’s studies course I could find in the early 1990s that covered both humanities and social sciences subjects including literature, history, religion, law, international development, women and work, psychology, sociology and medical sociology. I subsequently took a second masters in South Asian Area Studies at SOAS, London (politics, film, language - Urdu) mainly because I fell in love with Indian (‘Bollywood’) movies and by that stage of my career I had spent considerable amounts of time in South Asia and absorbing South Asian cultures. In between travelling and studying I worked at Labour Party HQ in the 1997 election, I’ve been an employment/management journalist, an academic book publisher, a teacher in Egypt, and an international aid worker for the UN refugee agency in Kathmandu.

I’ve never been very successful at dividing ‘career’ from life: they intertwine. Highlights include attending the Labour victory party in the Royal Festival Hall after an intense few months’ campaign organising for the 1997 election; interviewing Dame Stella Rimington, Baroness Dame Susan Greenfield and Deepak Chopra, among others, in my career as a journalist; receiving an award for feature writing at the 2000 Work World Media Awards; taking part in a BBC TV programme about British ‘Bollywood’ fans in which I was introduced to the world’s most successful film star – Shah Rukh Khan – and his Madame Tussaud’s waxwork; making a significant contribution to the 1990s abortion debate in Ireland through my MPhil research and leader articles on the contest over ‘rights’ in the Irish media; and helping in the work to support and resettle Bhutanese refugees left languishing in camps in Nepal for over 15 years. I’m also quite proud of having written a novel (still a draft) and having some poetry published. 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.

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 aims to address, as I shall set out below.

In the UK in 2013 the establishment of the CFS/ME Research Collaborative (CMRC) aims to promote the highest quality evidenced-based research and brings together researchers, funders and charities in collaboration to identify research priorities and increase awareness. Additionally, in the face of emerging evidence and patient criticism, NICE embarked in 2017 on a revision of its guidance on diagnosis and treatment (publication due 2020). This presents exciting current opportunities for collaborative working, and for policy intervention through comment on the NICE draft scope either via stakeholder organisations or as an individual. The NICE evidence surveillance process similarly indicates a need for research on the prevalence/incidence of the illness, the best ways of delivering care, its natural course – including life-course studies and definitions of recovery ¬ and on the best ways of measuring outcomes in research. My proposed research aims to address a number of these issues and, I believe, is therefore very timely. I will be seeking to engage in collaboration with CMRC organisations/institutions and to produce understandings and evidence relating to cultures of ME/CFS in the context of these ongoing developments and concerns.

 

I design and weave bags and scarves on a basic peg loom and possess a vast quantity (boxes and boxes) of interestingly textured yarns in every possible colour.