awareness of the severity of myalgic encephalitis (ME)/chronic fatigue syndrome (CFS)

Last edited 11/2021 and last reviewed 11/2021

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

Definitions of severity are not clear cut because individual symptoms vary widely in severity and people may have some symptoms more severely than others. The definitions below provide a guide to the level of impact of symptoms on everyday functioning.

Mild ME/CFS

• people with mild ME/CFS care for themselves and do some light domestic tasks (sometimes needing support) but may have difficulties with mobility. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often have reduced hours, take days off and use the weekend to cope with the rest of the week.

Moderate ME/CFS

• people with moderate ME/CFS have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work or education, and need rest periods, often resting in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.

Severe ME/CFS

• people with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may 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 sound.

Very severe ME/CFS

• people with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed

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.

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
• 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

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.

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

Reference:

• NICE (October 2021). Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management