Let's join together to raise awareness of severe and very severe ME/CFS

It is estimated that between 130,000 and 260,000 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.

The severity of ME symptoms means that people can be housebound/bedbound for years often needing 24 hour care to maintain activities of daily living (personal hygiene, using the toilet, eating & drinking etc), and they often lay in dark rooms due to hypersensitivity to light as well as others sensitivies to sound, scents, and touch. In very severe cases people with ME can need medical intervention to maintain nutrition via either a nasogastric tube (NG) or a permanent percutaneous endoscopic gastrostomy (PEG) feeding tubes and therefore may need input from a community nursing team with the aim to help manage these severe symptoms.

People with severe ME often mention they feel they are existing not living and as a consequence, the disease can have a devastating impact on their mental health. Patients have suffered decades of misunderstanding, misconceptions, and mistreatment from some healthcare professionals and this has further compounded the effects of this life changing illness. Sadly some people with severe ME have passed away and others have taken their own life due to this debilitating disease.

During Severe ME Week 2023 (7th – 13th August), we are going to share your stories and poems about being severely or very severely affected by this disease. Together we can raise awareness about how devastating this disease can be and try and share some hope and bring comfort to those still affected.

Please feel free to share the images below to help raise awareness this week.


The ME Association understands that this illness is extremely difficult to deal with on a daily basis and would like to encourage anyone needing support including family members to call our telephone helpline ME Connect.

0344 576 5326 


If you feel distressed and need help outside our helpline hours please reach out to speak with the Samaritans on their free helpline

116 123

The ME Association will continue to campaign to raise awareness of the inequalities affecting this large patient community and we aim to achieve respect and fair treatment for all. We also fund and support  vital biomedical research and offer education and training for healthcare professionals who want to learn more about this often misunderstood medical condition. 

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