NICE says there is no ‘one size fits all’ approach to managing ME/CFS symptoms.

It stresses the need for a tailored, individualised approach to care that allows joint decision making and informed choice.

The draft NICE guideline is open for consultation until December 22nd 2020.

Contact the helpline or use the contact form on this website with your comments for inclusion in the WAMES response.

You can read the draft guideline here

Read excerpts from the guideline here on our blog. Today we look at what the draft guideline says this about the attitudes and principles of care that health professionals should adopt:

Awareness of ME/CFS and its impact (p4)

1.1.2 Recognise that people with ME/CFS may have experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness. Take into account:

• how this could affect the person with ME/CFS
• that they may have lost trust in health and social services and be hesitant about involving them.

Approach to delivering care (p5)

1.1.3 Health and social care professionals should:

• acknowledge to the person the reality of living with ME/CFS and how symptoms could affect them
• take time to build supportive, trusting and empathetic relationships
• use a person-centred approach to assess people’s needs
• involve family members and carers (as appropriate) in discussions and care planning if the person with ME/CFS chooses to include them.

1.1.4 Recognise that people with ME/CFS need:

• early and accurate diagnosis so they get appropriate care for their symptoms
• regular monitoring and review, particularly when their symptoms are worsening or changing (see the section on managing flares and 14 relapse).

1.1.5 Explain to people with ME/CFS and their family or carers that they have the right to decline or withdraw from any part of their management plan and it will not affect other aspects of their care. They can begin or return to an intervention if they feel able to resume.

Additional principles of care for children and young people with ME/CFS (p5)

1.1.6 Be aware of the impact on children and young people with ME/CFS who have experienced prejudice and disbelief by people they know and who do not understand the illness (family, friends, health and social care professionals and teachers). Health and social care professionals should understand this experience may result in a breakdown of the therapeutic relationship, lack of trust and hesitation to engage further in health and social care services.

1.1.7 Ensure the voice of the child or young person is always heard by:

• taking a child-centred approach, with the communication focusing on them
• discussing and regularly reviewing with the child or young person how they want to be involved in decisions about their care (taking into account that their parents or carers may act as advocate)
• taking into account that children and young people may find it difficult to describe their symptoms and may need their parents or carers to help them.

Awareness of severe or very severe ME/CFS and its impact (p6)

1.1.8 Be aware that people with severe or very severe ME/CFS may experience some of the following symptoms that significantly affect their emotional wellbeing, communication, mobility 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, noise, touch, movement, temperature extremes and smells
• extreme weakness, with severely reduced movement
• reduced ability or inability to speak or swallow
• cognitive difficulties, causing a limited ability to communicate and take in written or verbal communication
• sleep disturbance such as unrefreshing sleep, hypersomnia, altered sleep pattern
• gastrointestinal difficulties such as nausea, incontinence, constipation and bloating
• neurological symptoms such as double vision and other visual disorders, dizziness
• postural orthostatic tachycardia syndrome (POTS) and postural hypotension.

1.1.9 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 bed-bound and may need support with all activities of daily living
• need careful physical contact when supported with activities of daily living, taking into account possible sensitivity to touch
• need aids such as wheelchairs
• cannot communicate without support and may need someone else they have chosen 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 section on dietary management and strategies)
• have problems accessing information, for example because of difficulty with screens, noise and light sensitivity, headaches affecting their ability to read, or brain fog affecting their concentration.

1.1.10 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 members or carers wherever possible
• aware of the person’s needs.

1.1.11 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 (for example, worsening their symptoms). For people with very severe ME/CFS, think about discussing this with the person’s family or carer on their behalf.