Severe ME Awareness Day - 8th August 2025
- SMEFG
- Aug 8
- 4 min read
On August 8th, Sheffield ME & Fibromyalgia Group (SMEFG) mark Severe ME Awareness Day, a day to remember and honour everyone who is suffering, or who has ever suffered, from severe and very severe ME.
Key summary points – Severe ME Awareness Day (8 August 2025)
Severe ME Awareness Day remembers and honours everyone who is suffering, or who has ever suffered, from severe and very severe ME. The date commemorates Sophia Mirza, who tragically died from severe ME after mistreatment and disbelief. About 25% of people with ME are severely affected, often bedbound, in extreme pain, and denied medical care.
This day raises awareness of the suffering, stigma, and lack of support people with severe ME face. Despite a worse quality of life than many major illnesses, ME remains underfunded and misunderstood. The new ME/CFS Delivery Plan fails to meet the needs of those with severe ME.
On Wednesday 6th August, DecodeME released their initial DNA results that they have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. These findings confirm that your genes contribute to your chances of developing ME/CFS.
Sheffield ME & Fibromyalgia Group (SMEFG) supports people with ME/CFS, fibromyalgia, and long Covid across South Yorkshire and North Derbyshire with benefits advice, information, and community resources. SMEFG invites feedback on how to better help those with severe ME, you can do this by emailing info@sheffieldmegroup.co.uk
Learn more: Read Sophia’s story | 25% ME Group | Delivery Plan critique | Support services | ME/CFS Delivery Plan | Does the ME/CFS Delivery Plan deliver? | DecodeME Summary results | DecodeME full preprint paper
ME Deserves: Recognition. Research. Respect.
This important awareness day was started by the 25% ME Group in 2013. The date was chosen in memory of Sophia Mirza, who died in 2005 due to severe ME.
Sophia was bedbound, severely ill, and tragically a victim of medical disbelief and mistreatment. Denied the care she needed, she was forcibly taken from her bed/home by social workers, police officers and doctors, and kept in a psychiatric facility where she received inappropriate treatment and care. Sophia subsequently died of ME at the age of 32. Her story remains a devastating reminder of the dangers of ignorance and neglect.
➡️ Read her story: www.sophiaandme.org.uk
What Is Severe ME?
Around 25% of people with ME are severely or very severely affected. This means they are often:
Housebound or completely bedbound
Unable to tolerate light, sound, touch, or movement
Too ill to use a wheelchair or leave their homes
In some cases, people are tube-fed, incontinent, and non-verbal
Many are left without access to medical care, as home visits are refused and hospital visits are impossible
Quality of Life – Among the Worst
Studies show that people with ME experience a lower quality of life than those with:
Multiple Sclerosis
Stroke
Diabetes
Renal Failure
Lung Disease
Heart Failure
Cancer
Despite this, ME remains severely underfunded, frequently misunderstood, and often dismissed by medical professionals.
On Wednesday 6th August, DecodeME released their initial DNA results that they have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. These findings confirm that your genes contribute to your chances of developing ME/CFS.
Professor Chris Ponting, DecodeME lead investigator, University of Edinburgh said “This is a wakeup call. These extraordinary results speak the language of people with ME/CFS, often recounting people’s ME/CFS symptoms.”
Read a summary of DecodeME’s results
Or check out the full preprint paper
The recent Delivery Plan on ME/CFS falls short for people with severe ME, lacking concrete services, meaningful funding, and enforceable action - read more here.
SMEFG Trustee Carolyn Leary has also written more about the Delivery Plan for ME/CFS and you can read it here.
Why This Day Matters
People with severe ME are among the most isolated, invisible, and disbelieved in our society.
Severe ME Awareness Day is a chance to:
Give a voice to those who cannot speak for themselves
Challenge stigma and misinformation
Highlight the urgent need for research, recognition, and respect
Remind the world that ME is not psychological, it is a devastating neurological disease
If you are an ally reading this, what can you do?
🔹 Learn about ME and listen to patients
🔹 Share accurate information
🔹 Challenge stigma and silence
🔹 Advocate for proper care, research, and recognition
How does Sheffield ME and Fibromyalgia Group (SMEFG) help our members living with Severe ME?
At SMEFG, we understand the complex and often isolating challenges of living with severe ME. We are here to offer meaningful, accessible support for people across South Yorkshire and North Derbyshire living with ME/CFS, fibromyalgia, and Long Covid.
We have a fantastic benefits team that can support you and you can find out more about the services the team provides here.
Additionally, our website contains extensive information about ME, including NICE guidelines and how to talk to your doctor about your symptoms, helping you navigate your healthcare journey.
We do provide a variety of wellbeing activities but we know that attending even online sessions can be difficult or not possible with severe ME. If you are living with severe ME or caring for someone who is, and have suggestions on how we can better support you, please get in touch at: info@sheffieldmegroup.co.uk
Other useful resources:
25% ME Group - https://25megroup.org/
ME Deserves: Recognition. Research. Respect.
On this day and every day, we remember those we’ve lost, stand with those who continue to suffer, and demand a better future for people living with severe ME.
