NICE ME/CFS draft guideline: distinguishing ME/CFS from abuse or neglect


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 highlight the recommendation that ME/CFS should not be mistaken for abuse or neglect.


1.7 Safeguarding (p16)

1.7.1 Safeguarding assessments in people with confirmed or suspected ME/CFS should be carried out or overseen by health and social care professionals who have training and experience in ME/CFS.

1.7.2 Recognise that people with ME/CFS, particularly those with severe or very severe ME/CFS¹, are at risk of their symptoms being confused with signs of abuse or neglect.

1.7.3 If an assessment under the Mental Health Act 1983 or the Mental Capacity Act 2005 is needed, involve health and social care professionals who have training and experience in ME/CFS. This should be done within 24 hours in an emergency.

Children and young people

1.7.4 Be aware that recognising and responding to possible child abuse and neglect (maltreatment) is complex and should be considered in the same way for children and young people with confirmed or suspected ME/CFS as with any child with a chronic illness or disability. Follow the NICE guidelines on child maltreatment and child abuse and neglect.

1 1.7.5 Using a child-centred approach, listen to the child or young person and support them to express their wishes and feelings. Follow the principles of the Children Acts 1989 and 2004 that the welfare of the child is paramount and that children are best looked after within their families, with their parents playing a full part in their lives, unless compulsory intervention in family life is necessary (see the Department for Education’s statutory guidance on working together to safeguard children).

1.7.6 Recognise that the following are not necessarily a sign of abuse or neglect in children and young people with confirmed or suspected ME/CFS:

  • physical symptoms that do not fit a commonly recognised illness pattern
  • more than 1 child or family member having ME/CFS disagreeing with, declining or withdrawing from any part of their management plan, either by the child or young person or by their parents or carers on their behalf
  • parents or carers acting as an advocate and communicating on behalf of the child or young person
  • reduced or non-attendance at school.

Why the committee made the recommendations (p55)

The committee recognised that safeguarding is a particular issue in ME/CFS in a way that is different from other chronic illnesses and disabilities because people with ME/CFS commonly report that they are not believed. No evidence was identified on safeguarding in ME/CFS, but the committee agreed it was very important to make recommendations based on consensus. The recommendations address some of the misconceptions on this topic and highlight the need for expertise in ME/CFS when carrying out safeguarding assessments.

The committee noted that although safeguarding is not solely about children and young people, most of the concerns they were aware of related to children and young people with ME/CFS, so they made separate recommendations for this group.

¹Severe or very 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 noise.

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.


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