A groundbreaking photography exhibition titled "Lives We Cannot Live" will showcase the harsh realities faced by people living with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) at London's prestigious Oxo Tower Wharf from September 24-28. The thought-provoking exhibition, created by documentary filmmaker and photographer Jeremy Jeffs and presented by The ME Association, features more than 50 striking images that capture the daily struggles of individuals battling this debilitating condition.
ME, also known as Chronic Fatigue Syndrome, is a complex multisystemic disease that affects multiple body systems. Patients experience a wide range of debilitating symptoms including extreme fatigue, sleep disorders, post-exertional malaise (worsening of symptoms after physical or mental activity), cognitive difficulties, chronic pain, persistent headaches, nausea, and severe intolerance to light and sound. These symptoms can be so severe that many patients become housebound or even bedbound for extended periods.
The exhibition presents powerful visual narratives from more than 20 individuals across the country who are living with varying degrees of ME/CFS severity. Some featured subjects are so severely affected by the condition that they are completely confined to their beds, while others manage to work part-time despite their limitations. Many others fall somewhere in between, struggling daily just to maintain basic existence and perform simple tasks that healthy individuals take for granted.
Photographer Jeremy Jeffs, whose London-based studio serves as his creative headquarters, brings a unique perspective to this project as he also lives with ME/CFS himself. One of the exhibition participants, Zaya Fullerton from North London, explained the vision behind the project. "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," Fullerton said. "Lives We Cannot Live is a series of documentary photographs, which shows people in the rooms and places that the disease traps them, and honestly communicates their personal experiences."
The statistics surrounding ME/CFS in the United Kingdom paint a concerning picture of a significant public health crisis. Current estimates indicate that more than 403,000 people in the UK are living with ME/CFS. Additionally, an alarming 950,000 people who have been unable to recover from COVID-19 infections could potentially meet the diagnostic criteria for ME/CFS, according to medical experts. When combined, these figures suggest that approximately 1,350,000 adults and children throughout the UK may be affected by this condition, representing a substantial and growing health emergency.
The photography exhibition serves a crucial purpose beyond artistic expression – it aims to create greater public understanding of this often misunderstood disease and illuminate the profound impact it has on patients' lives. Many people with ME/CFS report feeling invisible and forgotten by society, as the condition is frequently misunderstood or dismissed by those who don't experience it firsthand.
Martine Ainsworth-Wells, trustee and campaigns director at The ME Association, expressed her organization's pride in presenting this important exhibition. "The ME Association is incredibly proud to present Lives We Cannot Live which brings ME/CFS into the spotlight," Ainsworth-Wells stated. "The Oxo Gallery is a stunning space to visually convey people's 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."
The Lives We Cannot Live photography exhibition will be held at the Oxo Gallery, located in the Oxo Tower Wharf at Bargehouse Street, South Bank, London, SE1 9PP. The exhibition runs from Wednesday, September 24 through Sunday, September 28, and is open to the public daily from 11 AM to 6 PM. Admission to the exhibition is completely free, making this important educational and artistic experience accessible to all visitors who wish to learn more about the realities of living with ME/CFS.
