Awareness of severe and very severe ME/CFS and its impact

Awareness of severe and very severe ME/CFS and its impact

Also see the main section on principles of care for people with ME/CFS.

1.17.1 Be aware that people with severe or very severe ME/CFS may experience the following symptoms that significantly affect their lives, including their mobility, emotional wellbeing and ability to interact with others and care for themselves:

• severe and constant pain, which can have muscular, arthralgic or neuropathic features
• hypersensitivity to light, sound, touch, movement, temperature extremes and smells
• extreme weakness, with severely reduced movement
• reduced ability or inability to speak or swallow
• cognitive difficulties that limit the person's ability to communicate and take in written or verbal communication
• sleep disturbance such as unrefreshing sleep, hypersomnia and altered sleep pattern
• gastrointestinal difficulties such as nausea, incontinence, constipation and bloating
• neurological symptoms such as double vision and other visual disorders, dizziness
• orthostatic intolerance and autonomic dysfunction, such as postural orthostatic tachycardia syndrome (POTS) and postural hypotension.

1.17.2 Recognise that symptoms of severe or very severe ME/CFS may mean that people:

• need a low-stimulus environment, for example a dark quiet room with interaction at a level of their choice (this may be little or no social interaction)
• are housebound or bedbound and may need support with all activities of daily living, including aids and adaptations to assist mobility and independence in activities of daily living (for example, a wheelchair)
• need careful physical contact when supported with activities of daily living, taking into account possible sensitivity to touch
• cannot communicate without support and may need to choose someone to be their advocate and communicate for them
• are unable to eat and digest food easily and may need support with hydration and nutrition (see the recommendations on dietary management and strategies)
• have problems accessing information, for example because of difficulty with screens, sound and light sensitivity, headaches affecting their ability to read, or brain fog affecting their concentration.

1.17.3 Personal care and support for people with severe or very severe ME/CFS should be carried out by health and social care practitioners who are:

• known to the person and their family or carers wherever possible
• aware of the person's needs.

1.17.4 Risk assess each interaction with a person with severe or very severe ME/CFS in advance to ensure its benefits will outweigh the risks (for example, worsening their symptoms) to the person.

• For people with very severe ME/CFS, think about discussing this with the person's family or carers on their behalf (if appropriate), while keeping the focus of the engagement on the person with ME/CFS.