Children and Adolescents

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ME in Children
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 (a third video can be found below).

Page Contents:
Click the headings below to jump to each section on the page.

Part 1: Epidemiology

Part 2: Diagnostic Assessment

Part 3: Management

Part 4: Prognosis

Part 5: Information and Support

Real People. Real Disease. Real M.E.

At the ME Association, we believe it is high time the world at large realises that this disease can affect anyone – any age, any ethnicity – and can occur at any time of life.

People with M.E. are demonstrating they possess the confidence to be seen and are raising more awareness than ever before! It’s not too late: Join the Real M.E. campaign.

The ME Association Clinical and Research Guide

This section of the website comprises extracts taken from the 2019 edition of our guide

  • The 11th edition of our clinical and research guide is a must-have for anyone who has been affected by – or has an interest in – ME/CFS/PVFS.
  • This authoritative publication represents the most comprehensive, evidence-based summary currently available and contains everything that health professionals and patients need to know about this devastating neurological disease.
  • It has been written by Dr Charles Shepherd, Hon. Medical Adviser to the ME Association and Dr Abhijit Chaudhuri, Consultant Neurologist, from the Essex Centre for Neurosciences.
  • To purchase your copy, visit our website shop, or click the image opposite. The guide is also available as a Kindle e-Book!

Free Guide for Health Professionals!
We are pleased to offer a free hard-copy guide to GPs, NHS consultants and other healthcare professionals in the UK. Please contact head office with name(s) and address details, or for more information and for any bulk orders.

“ME/CFS is a biological illnessnot a psychologic disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have multiple pathophysiological changes that affect multiple systems.”

Centers for Disease Control (CDC) 2018

“ME/CFS is a serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients.”

Institute of Medicine 2015

“The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions.”

National Institute Health & Care Excellence (NICE) 2007

See Introduction for more information.

ME in Children – The course of the disease
Dr Nigel Speight, Hon. Paediatric Medical Adviser to the ME Association talks about M.E. in children and the ways in which the illness can affect them, in another short video 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.

Colin et al. 2015

  • 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.

Diagnosis and Management in Young People
This primer was produced by an international group of clinical experts including Dr Nigel Speight, Hon. Paediatric Medical Adviser to the ME Association. This 61-page brochure – which we make available as a free and authorised download – was compiled to provide the information necessary to understand, diagnose and manage the symptoms of the illness in children and adolescents.

Examinations and ME/CFS
This letter summarises the special arrangements that may need to be planned ahead so that students with ME/CFS can make the best use of their potential when taking exams and the special considerations that may be required in the marking process.

The ME Association

Please support our vital work

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.

Just click the image opposite to visit our JustGiving page for one-off donations or to establish a regular payment.

Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive our exclusive ME Essential magazine.


ME Association Registered Charity Number 801279


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