Herts Woman Features in Photography Exhibition highlighting ME/CFS

The experiences of Hertfordshire woman, Maureen Kinnear (72), who has lived with ME/CFS for more than 20 years, has been captured and displayed in an evocative photography exhibition at the iconic Oxo Tower Wharf on London’s South Bank (24-28 September 2025).

‘Lives We Cannot Live’, a new photographic exhibition by documentary film-maker and photographer Jeremy Jeffs, and presented by The ME Association, reflects the stark realities of daily life for people living with ME/CFS through a collection of more than 50 striking images.

ME (myalgic encephalomyelitis), also known as CFS (chronic fatigue syndrome), is a multisystemic disease. Symptoms include profound fatigue, sleep disturbance, post-exertional malaise, cognitive difficulties and a range of other symptoms like pain, headaches, nausea and intolerance to lights and noise.

Maureen who lives with her husband in Hemel Hempstead, and is retired, was diagnosed with ME/CFS in 2004 following a year of debilitating fatigue and other symptoms while working full-time. ‘I was really struggling with chronic fatigue, had no energy, and had muscle pains in my back and neck. I explained my symptoms to my GP who was brilliant. She understood, and recognising the symptoms, diagnosed ME/CFS. I felt like my life had just stopped, I felt lost and alone. I had always been a doer, yet I was in a position where I couldn’t cook dinner, get a drink, take a shower on my own, or do daily tasks that I once undertook with ease. It was a horrible time,’ explains Maureen. Having to give up work was tough for Maureen too.

Over the years, Maureen’s symptoms have created a significant barrier to daily activities and social interaction, even talking on the phone can leave her exhausted. Maureen has to ensure that she does not overexert herself, which can cause post exertional malaise (a delayed and significant exacerbation of ME/CFS symptoms that follows physical activity and cognitive (mental) activity. Today, Maureen’s symptoms have improved from 20 years ago and she has learnt the benefits of pacing, using mobility aids to support her with walking and standing. Also, meditation has helped her enormously manage her physical and mental health and she is part of the Breathworks-Mindfulness.org.uk community.

Maureen’s family, her son and husband, are very supportive and understand the impact of ME/CFS. She also finds great support through friends and a local Hertfordshire ME/CFS support group whom she meets with regularly. Maureen has also found her creative streak, and when energy allows, she enjoys painting, crafting and baking as a way to relax.

‘I felt extremely privileged to be part of the photographic exhibition at the Oxo Tower in London. Getting involved in anything that helps people understand ME/CFS and the effects on my life, on my family and friends, is a good thing. I’d like people who are in similar situations to know that there is help and support out there. The ME Association and Action for ME have been brilliant, particularly in the early days,’ said Maureen.

The exhibition showcases the images of more than 20 people; some with ME so severely that they are confined to bed, some are able to work part time, and many others who struggle to simply keep up with a basic existence. The images of Maureen reflect her day-to-day experiences of ME/CFS and were taken in her lounge at Hemel Hempstead, Herts.

Photographer Jeremy, who also lives with ME/CFS, said, ‘The idea for the exhibition was sparked by my own experiences of ME/CFS, and my aim was to capture a sense of what this isolating illness is like for people in the ME/CFS community. ‘Lives We Cannot Live’ is a unique, thought-provoking series of documentary photographs, and Maureen’s image along with others poignantly communicates their personal experiences.’

‘The ME Association is incredibly proud to present ‘Lives We Cannot Live’ which brings ME/CFS into the spotlight. The Oxo Gallery is a stunning space to visually convey peoples’ emotive stories, using powerful images to present a unique perspective that will leave a lasting impression on viewers. We hope it drives greater awareness and understanding of ME/CFS in society for the thousands of people who must navigate the challenges of this disease every day and often feel invisible and forgotten by society,’ said Martine Ainsworth-Wells, trustee and campaigns director at The ME Association.

The ‘Lives We Cannot Live’ photography exhibition is at Oxo Gallery, Oxo Tower Wharf, Bargehouse Street, South Bank, London, SE1 9PP from Wednesday 24-Sunday 28 September 2025. The event is open daily between 11am-6pm, admission free.