The importance of accurate diagnosis of ME/CFS in children and adolescents: A commentary (2018), by Geraghty and Adeniji

[MeSci]

Source: Frontiers in Pediatrics

Preprint

Date: December 31, 2018

URL:
https://www.frontiersin.org/articles/10.3389/fped.2018.00435/abstract

The importance of accurate diagnosis of ME/CFS in children and adolescents: A commentary
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Keith J. Geraghty(*) and Charles Adeniji

- University of Manchester, United Kingdom

* Correspondung author: University of Manchester, Manchester, United Kingdom, keith.geraghty@manchester.ac.uk

Received: 15 Oct 2018

Accepted: 31 Dec 2018.

Abstract

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic illness that causes a range of debilitating symptoms. While most research has focused on adults, the illness also presents in children and adolescents. Many physicians find it difficult to diagnose the illness. In this commentary paper, we discuss a range of salient themes that have emerged from our ongoing research into the prevalence of ME/CFS in children and adolescents. We discuss reasons why paediatric prevalence estimates vary widely in the literature, from almost 0% to as high as 3%. We argue that there is considerable misdiagnosis of paediatric cases and over-inflation of estimates of paediatric ME/CFS.

Many children and teenagers with general fatigue and other medical complaints may meet loose diagnostic criteria for ME/CFS. We make recommendations for improving epidemiological research and identifying paediatric ME/CFS in clinical practice.

Keywords: Chronic fatigue syndrome (CFS), Myalgic encephalomyelitis, diagnosis, Prevalence, Pediateric case

 

[Barry]

Keen to see the full article, which is open access I see,

 

[Andy]

Now available at https://www.frontiersin.org/articles/10.3389/fped.2018.00435/full

 

[Trish]

I've just read the full article. I'm pleased to see the focus on the problems with Crawley's work, both on her epidemiological studies that use survey based 'chronic disabling fatigue' as a proxy for ME/CFS and therefore wildly overestimate paediatric prevalence, and FITNET which is using too broad a definition for selection criteria.

I think this article is very important for the NICE considerations of paediatric ME. @Keela Too, @adambeyoncelowe.

 

[MEMarge]

Jane Colby posted on a parents Facebook Group that Tymes Trust had made open access possible for this, which is great.
They do SO much for children threatened with social services etc.

 

[Amw66]

This paper is important - it helps differentiate conflated conditions and helps place figures for " recovery" in context.

Definitions of recovery ( i have yet to see a paper where this is actually back to pre ME functioning) and the actuality eg - the international paediatric primer s statement that those who have claimed recovery have mainly adjusted their lives , that their function is still impacted - need to be publicised.

The narrative that " most recover" therefore requires to be more fully assessed as it would seem that those who recover simply do not have ME.

It may also help @Action for M.E. revise its webpages.

I have been thinking of a poll re adolescent ME given the many stories of " recovery" and later relapse as i feel this is important.

It would be better if this was perhaps not limited to a couple of forums ?

I' ll have to have a think re wording.