Around 25% of people with M.E. are severely affected by the condition. They are left house or bed bound, unable to properly care for themselves or even wash properly, sometimes for many years at a time.
The NICE guideline for M.E. says:
“People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.”
It adds that management of severe M.E. is “difficult and complex and healthcare professionals should recognise that specialist expertise is needed when planning and providing care.”
Action for M.E.’s 2014 M.E. Time to deliver survey report found that:
Our supplementary report “My life stopped...” Voices from Action for M.E.’s 2014 survey collected the experiences of those who are severely affected. You can find both reports in our Resources section.
One person with severe M.E. told us:
“My whole life has stopped because the fatigue and brain fog stopped me from working. I made the decision to stop driving in 1995 due to weakness in arms and legs, also lack of concentration. I stopped taking my children bowling, to football matches and horse riding. They lost me as they knew me when they were 11, 10 and eight.”
Severe M.E. has a considerable impact on the whole family:
“For a number of years my daughter from the age of nine was my main carer while her dad was at work. My husband is now my main carer on top of a full-time job. There is still a lack of understanding among my extended family.”
You can find out more about what it's like to live with severe M.E. by watching our awareness-raising film, My life is over: the pain of severe M.E.