Voices from the Shadows

Paediatric ME/CFS

Two world renown ME/CFS paediatricians, Prof Peter Rowe and Dr Nigel Speight, discuss paediatric ME/CFS diagnosis and management in two short videos for medical professionals, following publication of the comprehensive manual Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer  published in Frontiers 2017.

 

Peter Rowe MD is a Professor of Paediatrics and is Director of the Children’s Center Chronic Fatigue Clinic at the Johns Hopkins University School of Medicine, Baltimore, USA. His areas of clinical expertise include chronic fatigue syndrome, fibromyalgia and orthostatic intolerance. Prof Peter Rowe played a  major role in the production of  the recent  Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer. He was also a member of the team which produced the very influential report: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Published in 2015 by the National Academy of Medicine, USA, it includes diagnostic criteria, a clinicians guide and a comprehensive literature review.

Dr Nigel Speight is a  consultant Paediatrician with a long standing special interest in ME, based in Durham, UK. He is a medical advisor for several charities including the ME Association, The Young ME Sufferers Trust and the 25% ME Group. Dr Speight  was among the expert ME/CFS paediatricians contributing to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer. He previously contributed to the Myalgic Encephalomyelitis International Consensus Criteriaand it’s related “Primer’ for Medical Practitioners. 2011 He served on the Chief Medical Officer’s Working Party on ME 2002 and also the College of Paediatrics and Child Health Guidelines Group 2004.

 

Part 1. Diagnosis of paediatric ME/CFS with Dr Nigel Speight and Prof Peter Rowe

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Part 2. Severe ME/CFS and management of paediatric  ME/CFS 

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Key resources for paediatric ME 

2017. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer

2006. A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome – adopted by IACFS/ME  (based on the Canadian Consensus Criteria)

Video Prof Peter Rowe  A Clinical Approach to ME/CFS in Adolescent and Young Adults: A Practical Primer 

ME Association – Information about children and adolescents with  ME/CFS

The Young ME Sufferers Trust – Provides information about education at home for ME  patients.

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“These videos from two highly respected specialists provide well balanced information on the nature and management of ME in children. A useful resource for all those who have care of these children.”
Dr. Pamela Bell, Chair of the Pain Alliance Northern Ireland and former Lead Clinician for Pain Services at the Belfast Trust
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“These videos are important vehicles for educating the public and professionals about ME.”

Leonard A. Jason, Ph.D. Professor of Psychology.  Director of the Center for Community Research, DePaul University

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 ” These videos are an invaluable learning resource for any GP or trainee paediatrician and should be included in the vocational training curriculum.  Two of the leading international experts in ME/CFS discuss the salient diagnostic features and management of this important condition at a level of great relevance to non specialist practitioners. They demonstrate deep understanding and great empathy that this not uncommon problem poses for both patients and clinicians”

Bryan Spencer: retired GP and ex-CCG Clinical Lead

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 “These videos are invaluable for parents, doctors and teachers who are unsure how to manage the ill child in their care.”

Sue Waddle, Vice Chair ME Research UK and mother to a severely affected daughter

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 “Excellent resources for medical professionals and others on ME, not just identifying key symptoms but also how best to support children living with it, especially the more severely affected.”

Sonya Chowdhury, Chief Executive, Action for M.E.

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This is the Norwegian charity ME-Foreningen’s  page showing the videos and Norwegian translations of the written material. http://www.me-foreningen.info/om-me/sykdomsbeskrivelse/pediatrisk-me

This is the page in Dutch for ME/cvs Vereniging in the Netherlands – https://www.me-cvsvereniging.nl/nieuws/kinderen-en-jongeren-met-mecvs

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Key reports and information covering  diagnosis and management of children and adults.

2018. The US Centers for Disease Control and Prevention website was updated in the light of the IOM report, to remove recommendations for CBT and GET.

ME Association Clinical and Research Guide – updated each year. This “Purple Book’ is free for medical professionals

2017. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer

2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness 

2014. ME/CFS Primer for Clinical Practitioners (2014 revision)  produced by  IACFSME.

2012. Myalgic Encephalomyelitis: International Consensus Primer for Clinical Practitioners

2002. A Report of the CFS/ME Working Group – Report to the Chief Medical Officer of an Independent Working Group