Severe ME Day – a day to remember
Severe ME Day was established by the 25% Group on August 8th was chosen in remembrance of Sophia Mirza, a severe ME patient who died of the disease. Today the group uses the day to:
honour the strength of spirit of all those who have endured and continue to endure decades of suffering and profound physical dysfunction and yet receive little, or no recognition or help, but rather continue to experience gross misrepresentation and misinterpretation of their illness and profound disability.
World ME Alliance
WAMES joins the WMEA in featuring a short video that marks ‘A day in darkness’
As well as leaving many with ME/CFS confined to their homes, bedbound, or even immobile, the severe manifestation of the illness also can result in a single person experiencing 50 – 100 symptoms. MERUK gives an introduction to the profound effect these symptoms can have.
Many activities this year aim to highlight the need for better understanding and education about the severe and very severe experience of ME.
Unpaid carers – 25% ME Group recognises the essential role of unpaid carers in supporting the severely affected as they can be sensitive to stimuli and cannot cope with care workers.
Clinicians’ resource – The World ME Alliance have produced a new resource to help physicians learn about caring for peple with severe ME in crisis situations: Supporting People with Severe and Very Severe ME/CFS: A Resource Guide for Clinicians.
Severe ME Art project – The 2025 Severe ME Artists Project displays work from 100+ people via a video compilation, writers gallery, and individual images, and acknowledges the grief for those unable to practice their art due to illness and those who have had to change the way they continue their craft.
Music – Buy Kara Jane’s posthumous second album, In Limbo, released on Severe ME Day 8th August 2025, along with her previous album, It’s Still M.E. Kara’s dream was to raise £100,000 for ME research. Her family are continuing her fundraising efforts. https://karajanesings.com/
Poem – Ffion marks Severe ME Day with a poem about the turnaround that ME brings to life:
I always made the most of every day …
Now, I must live the very least I dare
Photos – The ME Association are sharing people’s #MEInMyRoom Photos
Whitney – From his bed Whitney describes life with severe ME and sends a message of support:
“To all those living in silence and darkness. Today we take a moment in silence and darkness to honor your courage, your bravery, your resilience, your strength, and we acknowledge your profound suffering, agony and loss.”
