On 24th-28th September 2025, The ME Association presented an exhibition of photographs by documentary film-maker and photographer, Jeremy Jeffs, called ‘Lives We Cannot Live', telling the stories of 50 people with ME/CFS.
Now the exhibition has closed, we are delighted that that Jeremy Jeffs has provided a video for those unable to attend, which you can watch below or on our YouTube Channel (@MEAssociationUKCharity).
Transcript
M.E is a doubly invisible illness: its symptoms are severe but seldom visible, while the disease itself attracts little recognition from the public or medical profession.
M.E (myalgic encephalomyelitis) is an incurable and complex multi-system illness that affects around 400,000 people in the UK. In its most severe form, M.E is devastating: people may be confined to bed for years at a time, unable to tolerate light, noise or touch, reliant on others for their most basic needs. People with severe M.E experience a lower quality of life than those living with multiple sclerosis, stroke, or lung cancer. In its milder forms, M.E can disrupt daily life, limiting work, study and social activities, forcing people to ration their limited energy.
The disease was identified in the early 20th Century but treatment quickly became a matter of dispute. Some doctors understood it as a neurological disease with an infectious or immunological trigger. Others defined it as a psychological condition, renaming it “chronic fatigue syndrome” and promoting treatments, such as graded exercise therapy, that are no longer recommended for M.E.
The psychological approach dominated for decades, with the consequence that research into biomedical causes was chronically underfunded, clinical expertise lost, and patients left without meaningful medical care. Only relatively recently has attention turned to biological causes with updated clinical guidelines, and promising new research into genetic roots of the disease.
This history means that many people with M.E have experienced disbelief from medical professionals, employers or even friends and relatives, creating a sense of stigma and isolation that can add significantly to the burden of living with the disease.
LIVES WE CANNOT LIVE sets out to bring visibility to this hidden community, demonstrating the range of people who live with the disease and the impact it has on their lives. Over the course of 3 years, Jeremy photographed 50 people with M.E, many housebound, most forced to give up work, and nearly all reliant on family for care and support.
“A resounding success…”
Martine Ainsworth-Wells, trustee and campaigns director at The ME Association said:
Lives We Cannot Live has been a resounding success, and we have been delighted to present the exhibition in such a prestigious London venue – one which has served as an effective platform to tell the stories of those affected by ME/CFS.
The images displayed were a powerful representation of people who often feel invisible and lost by society, and these photographs have made a long-lasting impression on visitors to the exhibition.
It was wonderful to see so many people come together to support ‘Lives We Cannot Live’ and help to drive greater awareness and understanding of ME/CFS.