UK Medical Education

People with mild ME 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.

People with moderate ME 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.

People with severe ME 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.

People with very severe ME 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.

Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.

Post-exertional malaise after activity in which the worsening of symptoms:

• is often delayed in onset by hours or days
• is disproportionate to the activity
• has a prolonged recovery time that may last hours, days, weeks or longer.

Unrefreshing sleep or sleep disturbance (or both), which may include:

• feeling exhausted, feeling flu-like and stiff on waking
• broken or shallow sleep, altered sleep pattern or hypersomnia.

Cognitive difficulties (sometimes described as ‘brain fog’), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.

Health and social care organisations should ensure that people with ME can use their services by:

• adapting the timing, length and frequency of all appointments to the person’s needs
• taking into account physical accessibility, such as how far the person has to travel, whether there is suitable transport and parking, and where rooms are for appointments
• taking into account sensitivities to light, sound, touch, pain, temperature extremes or smells
• providing care flexibly to the person’s needs, such as by online or phone consultations or making home visits.

People with ME should be given tailored information about their illness. It should be explained that:

• ME is a fluctuating condition
• the long-term outlook varies from person to person, but many will need to adapt to living with ME/CFS
• ME can be worsened by particular triggers
• ME can involve flare-ups and relapses even if symptoms are well managed, so planning for these should be part of the energy management plan.

People with ME should be signposted to support groups, given advice on financial and social support, and access to aids and adaptations.

Health profressionals should recognise that people with ME/CFS may have experienced prejudice and disbelief and could feel stigmatised by people (including family, friends, health and social care professionals, and teachers) who do not understand their illness.

They should involve families and carers (as appropriate) in discussions and care planning if the person with ME chooses to include them. They should also be aware that ME affects everyone differently and its impact varies widely – for some people symptoms still allow them to carry out some activities, whereas for others they cause substantial incapacity. It’s important to understand this is a fluctuating illness.