It is reported that approximately 25% of people with ME have severe or very severe ME
People with severe ME are housebound or often completely bed-bound, with some needing tube feeding. For people with severe ME, post exertional malaise can be triggered by minimal movement and activity, or visual and auditory stimulation.
According to the "25% ME Group":
Severe ME “will be able to carry out minimal daily tasks only, face washing, cleaning teeth, have severe cognitive difficulties and be wheelchair dependent for mobility. These people are often unable to leave the house except on rare occasions with severe prolonged after-effect from effort.”
Very Severe ME “will be unable to mobilise or carry out any daily tasks for themselves and are in bed for the majority of the time. These people are often unable to tolerate any noise and are generally extremely sensitive to light.”
As a physio you may come into contact with people with severe ME in hospital or community settings, as part of their ME management or for a co-morbidity.
Physiotherapy CAN be beneficial for people with severe ME in terms of:
Postural management / prevention of contractures
Improving and maintaining respiratory health
Equipment provision and activity modification to improve quality of life
Physios need to know how to respond safely and appropriately to people with severe ME, keeping in mind how easily you may trigger post exertional malaise. Factors to consider include:
Keeping light to a minimum
Keeping the volume of your voice low
Avoid wearing scented products
Consider obtaining subjective information through family and carers, or in short bursts to avoid over-exertion
Determine how you will measure the tolerance and success of any intervention, keeping in mind post exertional malaise is a delayed response
Further information can be found on the links below. If you have a specific patient you are concerned about, please feel free to contact us.
What do I need to know?
Watch these three short films about Severe ME
Understand the impact of ME when treating co-morbid conditions
Where can i find out more?
Further information from the charity specialising in severe ME:
A range of books have been produced for people with Severe ME, their carers and professionals:
Emily Rose Collingridge:
Severe ME/CFS: A Guide to Living
Follow the work of Ronald Davis, Professor of Biochemistry and Genetics at Stanford who cares for his son with severe ME