Children and Adolescents, The NICE Guideline on ME/CFS

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Children and Adolescents: The NICE Guideline on ME/CFS:
Part 1: Epidemiology Part 1: The ME Association’s position
Part 2: Diagnostic assessment Part 2: The 2017-2020 NICE review consultation
Part 3: Management
Part 4: Prognosis
Part 5: Information and support

ME Association clinical and research guide

The information in this section has been taken from An Exploration of the Key Clinical Issues:

  • The 10th edition is a must-have for anyone who has been affected by – or has an interest in – Myalgic Encephalopathy/Encephalomyelitis (M.E.).
  • It’s undergone a thorough, 6,000-word revision, is up to date, fully-referenced, and contains 147, A4-size pages.
  • It features a thorough clinical evaluation and all relevant published research.
  • Written by Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, and Dr Abhijit Chaudhuri, Consultant Neurologist, Essex Centre for Neurosciences, Clinical Issues is reviewed and revised on an annual basis.
  • You can purchase a copy from our online shop or by contacting head office on 01280 818964 (Monday-Friday, 9.30am to 3.00pm).

Free copy available for health professionals!

We have funds set aside in our medical education budget to provide free copies of our clinical and research guide to GPs and other health professionals. Contact us with the details on the phone number above, or send head office an email.

Children and Adolescents

Dr Nigel Speight, Hon. Paediatric Medical Adviser to the ME Association, talks about M.E. in children, what can be done to help them and their families, and the issues around management, in two short videos that were made by ME/CVS Vereniging.

Part 1:

Epidemiology

  • ME/CFS has been reported in children as young as five, and there appears to be a peak onset of symptoms around 13 to 15 years of age.
  • There is currently very little reliable information on the prevalence of ME/CFS among children and adolescents.
  • The report to the Chief Medical Officer (2002) referred to a prevalence rate of 0.07% for children and young people.
  • One study (Dowsett and Colby 1997) indicated that it is the commonest reason for long-term sickness absence from school.
  • A more recent report has highlighted the fact that unidentified ME/CFS is a major cause of school absence (Crawley et al 2011).

Part 2:

Diagnostic assessment

  • Diagnostic assessment of possible ME/CFS in this age group is very similar to that in adults. However, children do tend to present rather differently, and symptoms such as headaches, abdominal pain and disrupted sleep patterns tend to be more prominent.
  • Collin et al (2015) investigated differences between young children, adolescents and adults with ME/CFS. They found that:
    • Younger children had a more equal gender balance compared to adolescents and adults. Younger children were less likely to have cognitive symptoms and more likely to present with a sore throat.
    • Adolescents were more likely to have headaches and less likely to have tender lymph nodes, palpitations, dizziness, general malaise and pain compared to adults.
    • Adolescents were more likely to have co-morbid depression and less likely to have anxiety than adults.

The authors of the study concluded that paediatricians need to recognise that children with ME/CFS present differently to adults, and they queried whether these differences may reflect a different underlying pathoaetiology in children and adolescents.

  • Symptoms relating to hypermobility syndromes and autonomic nervous system dysfunction, including postural orthostatic tachycardia syndrome, can also be present in children and adolescents (Wyller and Helland 2013).
  • As with adults, children with ME/CFS may have significant problems relating to cognitive dysfunction, especially in relation to sustained attention, switching attention, auditory learning and immediate recall (Tucker et al 2011). The degree of cognitive dysfunction will obviously need to be taken into consideration when dealing with school attendance and educational issues.

A retrospective case note review of 131 children and adolescents attending a hospital-based specialist service found that 56% had at least one co-morbid condition – the most common being psychiatric, gastrointestinal, respiratory and musculoskeletal conditions (Oliver and Patel 2012).

  • There are other diagnoses that in some instances need to be excluded by further investigation.
  • Questions also need to be asked, where appropriate, about the use of recreational drugs and alcohol.

The tragic case of an Australian girl, who had been diagnosed as having ME/CFS but did in fact have mitochondrial neurogastrointestinal encephalomyopathy (MNGIE), illustrates the importance of a thorough specialist assessment for all children and adolescents who fall into the more severe category.

Part 3:

Management

  • Management of children and adolescents is similar to that of adults but with less emphasis on the use of drug treatments.
  • The ME Association website has a list of specialist referral services for children and adolescents, but these are few in number.
  • Consequently, some children and adolescents still face unacceptable delays in obtaining a diagnosis and/or have great difficulty in finding appropriate advice on management (Webb et al 2011).
  • Appropriate liaison with local education authorities, schools and teachers, which is aimed at keeping education going with home tutors, internet-based distance learning and part-time attendance, is vital.
  • Children who are sufficiently unwell to be away from school should generally be under the active care of a paediatrician.
  • Reduced school attendance in children with ME/CFS is associated with reduced physical function rather than with anxiety (Crawley and Sterne 2009).
  • It should also be noted that children and adolescents with ME/CFS may be eligible for various state sickness and disability benefits.

Part 4:

Prognosis

  • It is generally agreed that the prognosis for children and adolescents is much better than for adults (Katz and Jason 2013).

A 13-year follow-up study of 46 children and adolescents reported that 80% had a satisfactory outcome, although the majority had mild to moderate persisting symptoms, however 20% remained ill with significant symptoms and activity limitation (Bell et al 2001).

 

Part 5:

Information and support

  • There are registered charities that deal specifically with children and adolescents with ME/CFS – The ME Association works very closely with The Young ME Sufferers Trust, known as Tymes Trust.
    • Tymes Trust have been commended for providing the most comprehensive information regarding the education of young people with ME (Carruthers and van de Sande 2012).
    • The charity can be particularly helpful where advice on educational or child protection issues is required.
  • In December 2004, the Royal College of Paediatrics and Child Health published an evidence-based guideline on ME/CFS in children and adolescents (Royal College of Paediatrics and Child Health 2004).
    • Although the guideline contains much useful information, the ME Association was unable to endorse the section on behavioural interventions because it believes that these have not been covered in a balanced manner.

In 2017, a new primer on diagnosis and management in young people was published.

 

This was from an international group of ME/CFS expert clinicians including ME Association paediatric medical adviser, Dr Nigel Speight.

 

This new guide proved to be more realistic and therefore more useful than the aforementioned version.

Additional help from the ME Association:

> Although the ME Association is not primarily a charity for children and young people, we have produced a leaflet that is currently being updated with help from by Jane Colby (Executive Director of Tymes Trust), and will be available shortly.

> We also have a ‘to whom it may concern letter covering exams and the modifications that may be appropriate/justified for those with ME/CFS.

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The NICE guideline on ME/CFS

Part 1:

The ME Association’s position

  • In August 2007, the National Institute for Health and Care Excellence (NICE) issued clinical guidance on the diagnosis and management of ME/CFS (CG53).
  • The ME Association welcomed the fact that this guidance contained several very clear statements which reflect good clinical practice in the management of any complex chronic disorder: the statements on the need to provide balanced information, to obtain informed consent and not to coerce patients into approaches to management with which they are not happy.
  • However, when it came to some key findings and recommendations on both diagnosis and management of people with ME/CFS, the ME Association believes that some aspects of the NICE guideline are not fit for purpose because they:
    • broaden the diagnostic criteria as to what may be regarded as ME/CFS.
    • advocate a ‘one size fits all’ approach to management by placing far too much emphasis on the role of cognitive behavioural therapy and graded exercise therapy for everyone with mild or moderate ME/CFS.
    • provide inadequate information on the role of symptomatic relief, especially in relation to orthostatic intolerance and autonomic dysfunction.
    • fail to properly address many of the important non-drug aspects of management such as benefits, diet/nutrition and occupational health.
  • The NICE guideline was due to be reviewed in 2013, however, NICE concluded that as there were no significant developments to consider in relation to the management of ME/CFS, the guideline would be placed on the static list.
  • The ME Association has strongly opposed this decision, and when Forward ME met with Professor Mark Baker from NICE at the House of Lords in June 2014, there was an acknowledgement that the guideline did need to be revised.
  • The group also met with Dr Martin McShane, NHS England National Clinical Director for Long Term Conditions and Mental Health, to put the case for a review.

Part 2:

The 2017-2020 NICE review consultation

  • On 10 July 2017, the ME Association and other stakeholders were sent copies of a surveillance report from NICE that recommended no update to the current guideline. In effect, this would mean the guideline would not have changed since it had been published in 2007.
  • The only positive proposal was to remove the guideline from the static list – but this was because of a pending trial of internet-based CBT for children (the FITNET trial).
  • The ME Association was not at all happy to learn of this decision and based on similar public expressions of concern, decided to launch a petition to demonstrate to NICE just how wrong it was to leave the guideline unchanged.
  • The petition closed on 26th July having obtained over 15,000 supporters – and over 300 individual comments – and it was sent to Sir Andrew Dillon (the NICE Chief Executive).
  • At the same time, the ME Association and other stakeholders submitted formal responses to the surveillance report indicating their objections and explaining why it was felt the recommendation to take no action was wrong.

On 20 September 2017, we were both surprised and delighted to be informed that, due in large part to combined advocacy efforts, NICE had decided to review and update the clinical guideline for ME/CFS!

  • This really is excellent news as it means we will have another opportunity to try and ensure the guideline reflects the true nature of ME/CFS and represents what is best for patients with this disease.
  • The following have taken place since the announcement:
    • A stakeholder engagement workshop was held in January 2018, which marked the beginning of the review process.
    • Read Dr Charles Shepherd’s report about this meeting.
    • NICE published a draft scope report which was discussed at a stakeholders meeting in May 2018.
    • A revised draft scope was then issued and the ME Association made its first formal submission in July 2018.
    • Appointments to the guideline development committee – which will include up to 4 lay members – are currently awaited (August 2018).
  • The guideline committee will then be guided by the revised scoping report, and deliberate on content for the new guideline until April 2020.
  • In April 2020, it is expected that stakeholders will again have the chance to submit formal comments on the new draft guideline.
  • The revised and updated NICE clinical guideline on ME/CFS is not expected to be published until October 2020.

The ME Association

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Visit our other pages in this section:

> What is ME?
> Symptoms, testing, and assessment
> Diagnosis
> Management
> Prognosis and quality of life

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