The hidden devastating impact of Myalgic Encephalomyelitis (ME) is the subject of a new collaboration between an artist and scientists studying this debilitating condition.

Yasmin Crawford, Self Portrait

Artist Yasmin Crawford has been working with researchers in the Quadram Institute as part of her project that’s bringing across how ME affects every aspect of people’s lives.

Yasmin has a background in the life sciences and healthcare, but her career in this area was curtailed when she was diagnosed with ME in 2013. She is now on the slow path to recovery, and as part of this decided to do an MA in photography at Falmouth University.

“The slow realisation that your life might never be the same again and living the experience of adapting to the illness ME, that takes over and dramatically changes your life, was I felt, a story to be told, and one of my key motivations for undertaking the MA” said Yasmin.

Her MA work has explored many aspects of ME by using photography and the visual arts to express the hidden impacts and the attempts to self-manage and emotions of the condition.

“The MA from Falmouth University is a flexible and on-line course over two years and has given me the skills to visually communicate a lack of awareness and understanding around this debilitating condition, one that is still associated with much stigma today. It has become a way of creating a new life for myself within the visual arts and one I am able to fit around my illness.”

A photographer’s view. All Images copyright © yascrawford photography, all rights are reserved.

For her final dissertation, she wanted to move from looking out with her condition to looking in, and to draw on her scientific background and look at how to communicate the research that is going into ME.

“There are more and more collaborations developing between artists and scientists around many subjects, such as climate change and art therapy for mental health, for example. There is a lot less done around understanding how scientists work compared to artists and how raising this awareness might be used to develop and improve those collaborations and research outcomes.

From experience, it seems that artists and scientists work in completely different ways. I am interested in how bringing the two together, through the medium of photography, will allow more lateral, creative and less process-driven thinking. That individual and interdisciplinary research could be enhanced by visually communicating the science in a different way.”

Yasmin contacted the charity Invest in ME Research (IIMER). They put her in contact with researchers at the Quadram Institute that the charity has funded to undertake biomedical research into the disease. Invest in ME Research is an independent charity run by volunteers that through fundraising and crowdsourcing has been supporting biomedical research. In 2013 IIMER funded a PhD studentship in Norwich, the first of several students that the charity is supporting in the Quadram Institute.

These students, and their research, became the focus for Yasmin’s project.

Immune Mapping

“I very much enjoyed working with Yasmin, learning and participating in exploring different, alternative ways for communicating research” said Katharine Seton, who is one of the students funded by Invest in ME Research. “It was interesting to see the different techniques Yasmin uses to create visual representations of both ME as an illness and research. Spending this time with Yasmin made me realise the importance of exploring all the ways of communicating both research and science with a wider audience.”

Yasmin’s work will be on display at the 14^th Invest in ME Research International ME Conference at the end of May. This conference brings together researchers, clinicians, healthcare professionals and patients – including some of the QI researchers.

“It was such a pleasure to work with the students, they were very open to me spending three days with them, sharing their research ideas and extremely knowledgeable about their areas of work. In talking to them, it became clear that it was not just the research they were passionate about but about making a difference for the lives of M.E sufferers. One of the students has M.E and had dedicated her study to researching the condition. I found great commitment, work ethics and care of each other in respect of their studies and personally, which is a huge reflection on the Institution and its work.”

Immune I

The Quadram Institute’s researchers are continuing to work with artists to explore innovative and engaging ways of communicating their science to make it universally accessible to all. The first QI Artist in Residence, Jennie Pedley, has been bringing academics together with members of the public and schoolchildren, holding Art of the Gut workshops in local libraries and schools as well as in the institute. These have helped the scientists open up their research in new ways. Much of QI’s research effort is aimed at exploring the inner world of the gut, and the influence of microbes that are invisible to the human eye. Collaboration with artists and the creative sector has been incredibly valuable for building platforms that allow researchers, clinicians, patients and the public to come together.

It was this collaboration that was pivotal to the success of the Guardians of the Gut project.  This brought together Dr Lindsay Hall and her research group with the Science Art and Writing Trust, artist and maker Molly Barrett, the Norwich Hackspace and Tin House – a Norwich-based team of technicians and artists. Together they created a giant model of the human gut complete with an interactive microbial  population that provided an immersive environment for visitors to engage with the science of the microbiome and health.

All images are copyright © yascrawford photography, all rights are reserved.