lotusinthemud: re-framing m.e.

Re-framing ME

A chance meeting of art and science has led to a creative collaboration designed to raise the profile of an “invisible illness”.

Juliet Chenery-Robson decided to use photography to make people look at Myalgic Encephalopathy (or ME) in a different light when her 18-year-old daughter Emilia was diagnosed with the illness five years ago.

Despite affecting thousands of people in the UK, ME remains misunderstood by many health professionals, with many still believing it is “all in the mind”.

While looking for more subjects for her exhibition, Juliet was put in touch with Professor Julia Newton, a Clinical Professor at Newcastle University’s Institute of Ageing and Health, who is also a patron of charity ME North East.

Professor Newton’s team leads the way for chronic fatigue research in the UK and is one of the few places in the country focussing on the biological indicators behind illnesses such as ME.

“About two years after Emilia became ill, I was at my lowest point,” said Juliet. “I had no answers when she wanted to know why this was happening to her and I felt so guilty that I was unable to do anything to help.

“I wanted to do something both positive and pro-active instead so I became a trustee of ME North East and applied to study for a MA in Photography with the sole purpose of raising awareness about ME.”

Professor Newton was impressed by Juliet’s approach. She said: “I liked the concept and thought it was a perfect way of raising people’s awareness about the condition in a way that’s more visual than a scientific paper could ever be.

“People often have preconceived ideas about people with ME and Juliet’s photographs challenge many of those negative views.

“It was very interesting for me to see my patients in their own surroundings rather than in a stark, brightly lit room and it even made me look at them in a different way.”

Juliet has created a series of striking portraits of people who live under the shadow of this illness. Each portrait, including one of her own daughter, is taken in their personal space where they spend the most time, commonly a bedroom or living room, with their possessions around them but little clue to their situation.

“ME is still shrouded with an aura of disbelief and misconception,” said Juliet. “I didn’t want to show them as victims. The double standard is that people with ME often look fine which is also the problem, as people think they are making up their illness.”

Medical research helped Juliet ground her project and widen her knowledge of the illness. She visited hospitals, talked with medical researchers such as Professor Newton and photographed some of the research equipment, for example the tilt tables at Newcastle University and the MRI scanner at Newcastle General. These images were added to the exhibition, along with more abstract images such as vintage blood samples and butterflies in cases.

A selection of Juliet’s work, A Diagnosis of Exclusion, is on display at the DLI Museum and Art Gallery in Durham until 6 June 2010. Juliet, who is from County Durham and completed her MA at Sunderland University, received funding from the Arts Council to complete her ME project. She is also working with Professor Newton and the University’s Medical School to ensure her work is seen by as many trainee doctors as possible.

The science behind ME

The crux of the research being carried out at Newcastle University involves looking for the biological marker that predicts chronic fatigue. Professor Newton and her colleagues are investigating whether certain parameters highlight chronic fatigue and will use this knowledge to help devise simple, non-invasive treatments to improve patient’s lives.

Over half of the patients they have studied showed dramatic changes in blood pressure or increased heart rate when they stood up. Although most people will show some change, it is a marked difference in patients with ME.

Professor Newton believes the problem could go way back - to when we evolved to stand upright thousands of years ago. “We used to have our heart and head in line and now we’re upright, it looks likely that some people have physically evolved more successfully than others and can therefore cope better with the move from sitting to standing. It is a physiological response to the stress of standing up, as not enough blood is getting to the muscles.”

One of the ways Professor Newton and her team have been helping people with ME is through the use of HOT (Home Orthostatic Training). This process mimics the tilt tables used at the University but does not need any specialist equipment, so is easy and cost effective to use. It works by resetting the pressure receptors in the body, through a series of simple exercises.

“Historically, there are two different schools of thought in the medical profession when it comes to ME,” explained Professor Newton. “Those who think ME is a psychological problem and those who acknowledge that it is a physical condition, which can lead to other issues.

“I strongly feel it is a mistake to focus entirely on the psychological as the cause, rather than the consequence, of ME. If I was 18 and physically unable to get out and have any kind of life then I’d be pretty miserable too.”