Around 1 in 4 people with ME/CFS are estimated to be severely affected. Severe and very severe ME can have a significant impact on daily life, affecting mobility, communication, independence and the ability to participate in work, education, family life and social activities.
People with severe ME may be largely housebound, while those with very severe ME may spend most or all of their time in bed and be highly sensitive to light, sound, touch and other forms of stimulation.
How severe ME can affect daily life
People may experience:
- Significant difficulties with everyday activities
- Increased sensitivity to light, noise, touch or smells
- Severe fatigue and post-exertional malaise (PEM)
- Challenges with eating, personal care or communication
- Reduced ability to leave home independently
- A need for full-time or part-time care and support
Severe ME can also have a considerable impact on family members and carers.
Accessing care and support
The NICE guideline for ME/CFS recognises the additional needs of people with severe and very severe ME and recommends that services are flexible and accessible.
Support may include:
- Home visits where appropriate
- Telephone or virtual appointments
- Written communication
- Support with accessing equipment, aids and adaptations
- Individualised care and symptom management plans
Supporting quality of life
Although severe ME presents significant challenges, personalised support, symptom management and practical adjustments can help improve quality of life and reduce unnecessary strain.
Carers, family members and healthcare professionals all play an important role in supporting people with severe ME.
Severe and very severe ME are recognised, disabling forms of the illness that require understanding, flexibility and appropriate support. Access to person-centred care and reasonable adjustments can make a meaningful difference to both the individual and their carers.
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Source: Information adapted from Action for ME’s Severe and Very Severe ME resources and the NICE Guideline for ME/CFS (2021).