This year, for Severe ME Awareness Week 2025 (4th-10th August) we are showing the reality of the disease by sharing images either of people in their beds or the view they see from their bed – day to day, month to month and year to year.
These emotive images show a life are paused in an endless daily cycle of living the same day over and over, with currently no effective treatment or cure for this awful disease.
About Severe ME
It is estimated that at least 404,000 people in the UK have Myalgic Encephalopathy – the name we prefer – Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS) and around 25% of these people may have severe or very severe symptoms for prolonged periods.
ME/CFS is a multisystem disease involving involving the brain, muscle, immune and neuroendocrine systems. Symptoms include profound debilitating fatigue, sleep disturbance, post-exertional malaise – a delayed and significant exacerbation of ME/CFS symptoms that follows physical activity and cognitive (mental) activity – cognitive difficulties and can include a range of other symptoms like pain, headaches, nausea, hypersensitivities and intolerances.
The severity and intensity of ME symptoms means that people can be housebound/bedbound for months or years often needing 24 hour care to maintain activities of daily living (personal hygiene, using the toilet, eating & drinking etc). They often lay in dark rooms due to hypersensitivity to light as well as others sensitivities to sound, smells, and touch.
#MEInMyRoom Photos
We asked our Social Media followers to send in images and one member of our community, who would like to be credited as M.S, provided a particularly impactful collage of 500 photos, one taken everyday for around 500 days.
I have been bedbound with severe ME for the last 500+ days. The following are photos of my view, representing every day I had enough energy to take a picture.
Please click on a collage to enlarge it.
This poignant example of days spent in one room are an accurate representation of the poor quality of life experienced by those severely affected by this devastating disease.
Made all the more emotional that this illness predominately impacts young people/adults in 20s, 30s and 40s – although it also affects older people – who have had a previously active life and who never return to pre-illness levels of activity.
Severe ME Week is a time to raise awareness of the often most neglected and unseen people within the ME/CFS community, hidden behind a door and trapped in four walls, and this shows the true nature of this distressing disease.
Thank you M.S. for allowing us to share your photos during Severe ME Awareness Week.
Please support #MEInMyRoom, #SevereMEAwarenessWeek and #SMEWeek2025 by sharing our posts during the week!
Thank you!
