New ME/CFS guideline published
On 31 October 2021, NICE published an updated version of the ME/CFS clinical guideline following their consultation. The RCPCH consulted on the guideline in November 2020 and continued to meet with the National Institute for Health and Care Excellence (NICE) as they worked with patient groups and representative organisations to finalise the guideline.
The RCPCH raised a number of issues in the consultation on the draft guideline (RCPCH’s response is on pages 742-775), including safeguarding of children and young people (CYP), practicalities of assessment and recommended therapies.
Whilst we acknowledge that NICE has made further revisions to the final guideline, the RCPCH is concerned that the provisions described for safeguarding may preclude the rapid identification of abuse and neglect of children and young people in some (hopefully rare) instances. Where children are thought to have severe or very severe ME/CFS resulting in withdrawal and school absence, or where manifestations of the disease are similar to those that typically arouse safeguarding concerns, more frequent face to face review (than the six-monthly suggested in the new guideline) should be considered to ensure the child or young person’s wellbeing.
It is essential for paediatricians to be consulted to exclude other causes of fatigue and malaise such as cancer or occult infection. It is clearly important that alternative treatable causes of fatigue should not be missed.
Finally, NICE has acknowledged the disparity in which the definition of Graded Exercise Therapy is understood. We anticipate that this will be fully discussed between clinicians and patients (and their parents or carers) in respect of previous, existing or proposed therapy as these important specialised services continue to be developed.
We hope this briefing, which contains our view on some of the new recommendations, will support paediatricians in taking the new guidance forward.
Note: The guidance states that the recommendations were developed based on evidence reviewed before the COVID-19 pandemic. NICE has not reviewed evidence on the effects of COVID-19, so it should not be assumed that these recommendations apply to children and young people diagnosed with post-COVID-19 syndrome.
The new guidance now contains a short section on safeguarding. It states:
1.7.1 Recognise that people with ME/CFS, particularly those with severe or very severe ME/CFS, are at risk of their symptoms being confused with signs of abuse or neglect.
1.7.2 If a person with confirmed or suspected ME/CFS needs a safeguarding assessment, directly involve health and social care professionals who have training and experience in ME/CFS as soon as possible.
1.7.3 If a person with confirmed or suspected ME/CFS needs to be assessed under the Mental Health Act 1983 or the Mental Capacity Act 2005, directly involve health and social care professionals who have training and experience in ME/ CFS as soon as possible.
1.7.4 Recognise that the following are not necessarily signs of abuse or neglect in children and young people with confirmed or suspected ME/CFS:
1.7.5 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.
1.7.6 Offer children and young people with ME/CFS a review of their care and support plan at least every 6 months, and more frequently if needed, depending on the severity and complexity of their symptoms.
RCPCH view and advice for paediatricians
It is extremely welcome to see inclusions on safeguarding in the guideline, including some with specific reference to children. However, we remain concerned that the provisions described for safeguarding may diminish the voice of children and young people and prevent the rapid identification of abuse and neglect in some instances.
Paediatricians should consider the individual person in front of them. In cases where children are thought to have severe or very severe ME/CFS resulting in withdrawal and school absence, or where manifestations of the disease are similar to those that typically arouse safeguarding concerns, paediatricians should consider more frequent in-person reviews than the suggested six monthly intervals suggested in 1.7.6 in order to ensure the child or young person’s wellbeing.
Graded exercise therapy
The NICE guidance now presents an explicit definition of graded exercise therapy (GET) in Box 4, page 32.
|Graded exercise therapy is a term used in varying ways by different services supporting people with ME/CFS. In this guideline, graded exercise therapy is defined as first establishing an individual's baseline of achievable exercise or physical activity, then making fixed incremental increases in the time spent being physically active. This definition of graded exercise therapy reflects the descriptions given in the evidence that was reviewed, and it is this approach that the guideline says should not be undertaken. An individualised approach that should be taken for people with ME/CFS who choose to undertake a physical activity or exercise programme is described in recommendations 1.11.10 to 1.11.13.|
We have included below a table of the recommendations in the guideline related to an individualised approach to physical activity or exercise programme.
1.11.10 Only consider a personalised physical activity or exercise programme for people with ME/CFS who:
1.11.11 Tell people about the risks and benefits of physical activity and exercise programmes. Explain that some people with ME/CFS have found that they can make their symptoms worse, for some people it makes no difference and others find them helpful.
1.11.12 If a physical activity or exercise programme is offered, it should be overseen by a physiotherapist in an ME/CFS specialist team.
1.11.13 If a person with ME/CFS takes up the offer of a personalised physical activity or exercise programme, agree a programme with them that involves the following and review it regularly:
RCPCH view and advice for paediatricians
The NICE definition of GET describes increasing activity in fixed increments which is not how it is commonly implemented in current clinical practice by paediatricians. Instead, paediatricians use an individualised approach to gradually improve physical abilities.
It will be particularly important for paediatricians to note and understand this change, and to discuss this with patients and their families or carers in respect of previous, existing or proposed therapy as they continue to be prescribed.
We fully appreciate that there are differences of opinion on GET. However, it’s important to be clear about the new NICE guidelines and talk through the change with those in your care and their families.
Assessment of the whole person
As highlighted above, there is now an inclusion on the regularity of assessments for children, in section 1.7.6 on safeguarding. This notes that children and young people should be seen at six-monthly intervals and more frequently if needed, depending on the severity and complexity of their symptoms.
The guidance also links to a range of other documents to consider if CFS/ME is suspected. For example, as stated in section 1.2.3, it is essential for paediatricians to be consulted to exclude other causes of fatigue and malaise such as cancer or occult infection. It is clearly important that alternative treatable causes of fatigue should not be missed.
RCPCH view and advice for paediatricians
While the six-monthly review of children or young people with ME/CFS should be offered and this is stated in the guideline, paediatricians should always discuss care options with the patient and their family or carers.
For a child and young person, six monthly intervals may not be enough, and the clinician may wish to see the patient more frequently. They will also wish to consider other symptoms and issues that could be impacting the child or young person.
Further information for paediatricians
You may also wish to look at the British Association for CFS/ME (BACME) website. BACME is a multidisciplinary organisation for UK professionals who are involved in the delivery of clinically effective services for patients with ME/CFS.