Some people are more severely affected by M.E. They may be confined to bed or unable to leave the house without the use of a wheelchair. However, only a small minority of patients remain bed or wheelchair bound for any length of time.
If your illness deteriorates to this level, there is every chance you will improve in time.
Careful management is needed. Realistic goals should be identified, however small, and the principles of pacing applied.
It is important to maintain a relationship with your doctor and obtain extra help if and when required.
Although your GP may have limited experience of caring for someone with M.E., they can still advise you and any carers, as well as regularly monitor your health.
If you are confined to bed you need to be assessed to ensure that secondary problems such as pressure sores and muscle wasting are prevented.
If help is needed with personal care, social services can assess you. This is called an assessment of need.
If you have severe M.E., you may like to read Emily Collingridge’s book, Severe ME/CFS: a guide to living.
The 25% M.E. Group is run by people with severe M.E. for people with severe M.E. Contact their office on 01292 318611 for more details.
Share your story
If you'd like to share your experience of severe M.E. with us, please tell us your story.
Read the experiences of Stella and Vickie
See also John's letter for Christmas with M.E.