Severe ME Week – 2nd – 8th August 2021

August 2, 2021


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 among others like sound, scent, 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.

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 telephone helpline ME Connect.

0344 576 5326 
365 days a year
10am-12noon
2pm-4pm
7pm-9pm

If you feel distressed and need help outside our helpline hours please reach out to speak with the Samaritans on their free helpline Call 116 123

For many, symptoms can fluctuate dramatically and this unpredictable nature of the disease means that they can also experience severe symptoms for prolonged periods of time. Relapse or exacerbation of symptoms are often triggered post exertional malaise although infections, hormone fluctuations, hypersensitivities, intolerances, and stress.

We 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. 

Let's join together this week to raise much needed awareness of severe ME.

Thank you for your continued support.

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