Severe ME Awareness Week - The ME Association

Severe ME Awareness Week 2026:
3rd-9th August

Send us your Art/Poems/Stories for Severe ME Week 2026

During Severe ME Week 2026 (3rd-9th August), we would like to share your artwork, poems or stories about being severely or very severely affected by this disease on social media to help raise awareness of how debilitating this disease is.

If you have Severe ME and would like for us to share your art/poem/story about living with ME during Severe ME Week 2026, you can use the form below to send it to us.

Submissions are open until July 19th, 11:30pm, and we will go through and select which works to share on social media. If we get a high volume of submissions we won't be able to share everything, but please know we appreciate you taking the time to share your art/poems/stories with us.

By completing this form, you are providing The ME Association with permission to use your photos, videos or story in our communications. Thank you for your help.

Full Name

Email Address

We will keep this confidential as part of data protection, however as part of GDPR rules we need you to consent, and we will keep this contact email address on file in association with permission to use your story or photograph/s.

What will my submission be used for? (Please tick the options you are happy with)

Website: The ME Association's website
Social media: The ME Association's social media pages, such as Facebook, Instagram, X, LinkedIn, Threads, Bluesky
Publications: The ME Association's leaflets, posters, newsletters, ME Essentials magazine, and other marketing materials

You can choose to have your real name published with your content or remain anonymous:

I am happy for my real name to be used
I do not want my real name to be used

You may attach your videos/photos/stories here:

Drag & Drop Files, Choose Files to Upload You can upload up to 5 files.

Accepted file types doc, pdf, jpg, jpeg, png, mpg, mov, wmv, mp4 and mp3 size up to 50MB each.

Any additional details about your submission, such as any context about yourself or your artwork, which you would like us to include?

Would you like us to tag you if we share your submissions on Social Media? If so, please provide your Social Media handles below.

Anything else you want to tell us?

Please read and agree to the following before submitting

I understand that my details and photographs/videos will be kept in a database.

I understand that I can request my data to be removed from the database, however I understand that the previous use of the media may not be able to be removed. This is because images/video used on social media or websites can be saved or shared elsewhere, and once this happens we are unable to access it.

I have read and understood the information above and I give permission for my submitted content to be used by The ME Association for the purposes outlined above.

I agree

What is Severe ME?

It is estimated that at least 404,000 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 and intensity 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 sensitivities to sound, smells, 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.

** Trigger Warning: Upsetting Content **

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 and misconceptions, which 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.

ME CONNECT HELPLINE

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 ME Connect support line

0808 801 0484

SAMARITANS

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

Support the ME Association:

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. 