IMAGE DESCRIPTION: A featured image with many images of people with severe ME from our library of Real People, Real ME images. The ME Association logo (bottom right)

Do you have experience of severe or very severe ME/CFS?

During Severe ME Week 2023 (7th – 13th August), we’d like to share your stories, poems, and quotes about being severely or very-severely affected by this disease. You might be severely affected now or have experience of being severely or very-severely ill and want to share your experiences. 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.

Severe ME Week is a time to raise awareness of those in the community who are often most neglected. The ME Association has always tried its best to show the reality of severe and very-severe ME and we highlight Severe ME Week every year. It is important that people understand that this condition can be extremely life-limiting – especially in the severest of cases – and it can be terribly distressing for the affected individual and their families.

We would like to point out that there is a need for increased understanding and support from healthcare professionals whose job it is to take care of people with severe and very severe ME. The 2021 NICE Guideline on ME/CFS sets out specific recommendations for people who are most affected (1.17 Care for people with severe or very severe ME/CFS). We are working to ensure the medical community is fully aware of these recommendations and that all GPs and specialist services can provide this level of care and that all services are accessible to people unable to leave their beds or homes and to their representatives.

It can really help to write about your own experiences. Not just to raise awareness but to join with others who have similar experiences and to feel less alone. It might be a little scary, the thought of having your thoughts published, but know you are helping other people too. Writing can be a good way to express some of the feelings you might be keeping bottled up inside. We need your voice to be heard.

For those with severe ME who wish to help raise awareness, we appreciate it can be difficult to contribute due to the severity of symptoms and we understand that you may need help from a family or friend. But we hope to hear your voice. We would also like to hear from anyone who has experienced severe or very severe ME.

The following questions might help you to frame your story, but they are only suggestions. It’s up to you what aspect of severe or very severe ME you would like to write about.

a) Explain a day in your life with Severe ME. 
b) Explain what life was like before you were ill. What do you miss the most and is there anything you are able to enjoy now? 
c) Have you made any relative improvements compared to when your illness was at its worst? How have you improved and what effect has it had on your wellbeing?  
d) Did you receive a diagnosis of ME after a Covid infection? 
e) Would you be able to share a short quote that explains the impact of ME on your life? 
f) Choose an everyday activity and the steps you need to take or the help you receive to manage that simple task e.g., eating, drinking, with personal hygiene. 
g) Have you or could you write a poem about an aspect of severe or very severe ME? 

Please send your stories quotes and poems to by 01 August 2023. Stories should be no longer than 500 words and include a photograph. If you’d prefer to retain anonymity then we are happy to do so, just let us know. 

If you would like to join over 500 other people in the Real ME Campaign, please provide a photograph and we will use your story for context in any future publications. 

Once we have received your submission we will review and discuss any edits with you. The decision to publish remains with the ME Association.  

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