Severe ME Awareness Day - 8 August 2026
On 8 August, 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 2026)
Severe ME Awareness Day honours those living with or lost to severe ME, including Sophia Mirza, who tragically died in 2005 due to neglect 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.
One year after the DHSC's Delivery Plan for ME/CFS, progress for people with severe ME remains limited. Recent freedom of information data obtained by @Lucibee and reported by the ME Association revealed extremely low uptake of NHS England's ME/CFS e-learning modules, including the module on severe ME.
#MEAction UK are asking people to get in touch with their MP to lobby the Health Secretary, more information on how can be found on their website.
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 | Freedom of Information Data | #MEAction campaign | ME/CFS Delivery Plan | DHSC Delivery Plan on ME/CFS – One year on
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.
One year after the DHSC published its Delivery Plan for ME/CFS, there is an unacceptable lack of progress into meaningful improvements for people with severe ME. Recent Freedom of Information data obtained by @Lucibee and reported by the ME Association revealed extremely low uptake of NHS England's ME/CFS e-learning modules, including the module on severe ME. Greater uptake of this training will be essential if healthcare professionals are to develop the knowledge and understanding needed to provide appropriate care for people with severe ME.
However, the ME Association recently updated “there is important work in progress away from the DHSC Delivery Plan relating to the care and management of people with very severe ME/CFS who may require hospital admission, or are currently in hospital.” you can read more here.
The need for a specialised service for those with severe ME was illustrated by the DHSC ME/CFS Final Delivery Plan but the start of this process has now been pushed back to April 2027. #MEAction UK are asking people to get in touch with their MP to lobby the new Health Secretary Yvette Cooper, more information on how can be found on their website.
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.
