CARE FOR PEOPLE WITH SEVERE AND VERY SEVERE ME/CFS

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

Risk assess each interaction with a person with severe or very severe ME/CFS in advance to ensure its benefits will outweigh the risks to the person.

Offer home visits to people with severe or very severe ME/CFS to carry out their holistic assessment and develop their care and support plan.

The following extracts supplement the rest of the NICE clinical guideline recommendations with additional considerations for people who are severely or very severely affected by ME/CFS

Additional symptoms

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.

Symptom impact

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

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.

This could include home visits, online or phone consultations, supplying written communication, and supporting their applications for aids and appliances.

Assessment, care, and support planning by an ME/CFS specialist team

Offer home visits to people with severe or very severe ME/CFS to carry out their holistic assessment and develop their care and support plan.

Access to care and support

Service providers should be proactive and flexible in delivering services to people with severe or very severe ME/CFS, who may have particular difficulty accessing services and articulating their needs.

This could include home visits, online or phone consultations, supplying written communication, and supporting their applications for aids and appliances.

Hospital care

When planning hospital care for people with severe or very severe ME/CFS:

  • discuss with the person (and their family or carers, as appropriate) what to expect when they come into hospital,
  • aim to minimise discomfort and post-exertional malaise during transfer to hospital, for example by planning the route in advance, avoiding noisy areas, and admitting them straight to the ward on arrival,
  • discuss the person's care and support plan with them, including information on comorbidities, intolerances, and sensitivities, to plan any reasonable adjustments that are needed,
  • aim to provide a single room if possible,
  • keep stimuli to a minimum, for example by:
    • seeing them one-to-one,
    • using calm movements and gestures,
    • not duplicating assessments,
    • being cautious about the pressure of touch,
    • keeping lights dimmed,
    • reducing sound,
    • keeping a stable temperature,
    • minimising smells.

Managing ME/CFS

Also see website page about Management

Energy management

Refer people with severe or very severe ME/CFS to a physiotherapist or occupational therapist working in an ME/CFS specialist team for support on developing energy management plans.

When agreeing energy management plans with people with severe or very severe ME/CFS (and their family or carers, as appropriate), take into account the need to make any changes in activity smaller and any increases (if possible) much slower.

Dietary management and strategies

Refer people with severe or very severe ME/CFS for a dietetic assessment by a dietitian with a special interest in ME/CFS.

Monitor people with severe or very severe ME/CFS who are at risk of malnutrition or unintentional weight loss because of:

  • restrictive diets,
  • poor appetite, for example linked with altered taste, smell, and texture,
  • food intolerances,
  • nausea,
  • difficulty swallowing and chewing.

Follow the recommendations on screening for malnutrition and indications for nutrition support, in the NICE guideline on nutrition support for adults.

Give advice to support people with severe or very severe ME/CFS, which could include:

  • eating little and often,
  • having nourishing drinks and snacks, including food fortification,
  • finding easier ways of eating to conserve energy, such as food with softer textures,
  • using modified eating aids, particularly if someone has difficulty chewing or swallowing,
  • oral nutrition support and enteral feeding.
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