It is believed that around 25% of people with ME experience the severe form of the condition. Whilst symptoms are known to fluctuate, people with severe ME can experience symptoms at the same level, for most of the time, or on a continual basis.
People with severe ME can spend considerable amounts of time being confined to their house, a wheelchair, or their bed. Many cannot live independently, and may be cared for by family members, partners, and formal Carers.
Severe ME can cause a range of complex problems, including loss of movement, speech, and the ability to eat, and areas such as concentration, short-term memory and attention can be extremely poor. Most, if not all, will need a great deal of assistance in attending to their personal care.
The 25% group have made this statement: "We may not be able to present ourselves to the world because of severe ill-health, but we want to be listened to and heard by the appropriate authorities, and to receive services and appropriate help. We would also like to see more biomedical research undertaken, and cognisance taken of the body of biomedical research that exists at present".
Whilst health levels can improve, it can be a very long road. A small minority of people with severe ME will remain severely affected. You can purchase the book Severe ME/CFS: A Guide to Living via the website severeme.info. Please click here to read more about the symptoms of ME.