ME/CFS, often referred to as the ‘disease of a thousand names’, affects over 250,000 people in the UK and many thousands more worldwide. In 2004 my daughter was diagnosed with the illness at the age of 13, sparking my interest and leading to my current Phd on the subject.

My Phd entitled ‘Mimesis 3: Visualising the Invisible Illness ME’ focuses on the visual representation of ME. It considers how photographic practice might articulate aspects of ME, an illness that is not only ‘invisible’ but has been challenged and questioned in terms of the existence in many quarters. Despite having been accepted as a neurological illness by the World Health Organisation (WHO), ME remains misunderstood by many health professionals, with many still believing it is “all in the mind”.

Finding ways to represent the invisible, by working with ME sufferers within their homes to develop a visual interpretation of their illness, will hopefully help to eliminate the prejudices surrounding this illness. Being a complex disease with no visible signs of illness, but rather a collection of symptoms, photography cannot be used simply to record ME, but rather has to be thought of in terms of metaphor.

My PhD includes questionnaire responses from volunteers suffering from ME, photographic portraits in their home environment, their rooms, possessions and images from their family albums, head & shoulder portraits, SenseCam images, Google map images of ME outbreaks worldwide and notes from volunteer’s notebooks.  I am also continuing to document hospital and university research labs and researchers studying ME symptoms. Through my detailed research, investigation and photographic works I hope to help make this devastating illness visible to an often disbelieving audience.

‘ME: A Diagnosis of Exclusion’ & ‘Unpredictable Patterns’ photographic exhibition is currently touring LwA Charity Arts Centres.

Juliet Chenery – Robson