Tag Archives: children

Developing & pretesting a new patient reported outcome measure for paediatric CFS/ME

Posted on 11/18/2019 by wames

Developing and pretesting a new patient reported outcome measure for paediatric Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME): cognitive interviews with children, by Roxanne M. Parslow, Alison Shaw, Kirstie L Haywood, Esther Crawley in Journal of Patient-Reported Outcomes Vol 3, p 67 [First … Continue reading →

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Survey of the experiences of children & young people with ME for NICE

Posted on 09/16/2019 by wames

The experiences of children and young people with ME are needed to help create a new guideline for how health professionals in England and Wales diagnose and support them and their family. If you are aged between 9 and 18 … Continue reading →

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Management of chronic fatigue syndrome/myalgic encephalomyelitis in a pediatric population: A scoping review

Posted on 09/09/2019 by wames

Management of chronic fatigue syndrome/myalgic encephalomyelitis in a pediatric population: a scoping review, by Sarah S Collard, Jane Murphy in Journal of Child Health Care, 4 Aug 2019 [https://doi.org/10.1177/1367493519864747] Review abstract: Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) negatively impacts the quality … Continue reading →

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Academics object to the continued publication of the Lightning Process for children study

Posted on 09/02/2019 by wames

Trial By Error: an open letter to Dr Godlee about BMJ’s ethically bankrupt actions, by David Tuller in Virology blog, 28 August 2019   I have sent the following letter to Dr Fiona Godlee, editorial director of BMJ, about Archives … Continue reading →

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MAGENTA trial comment: ‘Targeting activity levels in ME/CFS

Posted on 08/02/2019 by wames

Michiel Tack queries some conclusions of the recently published MAGENTA trial paper. Physical activity patterns among children and adolescents with mild-to-moderate chronic fatigue syndrome/myalgic encephalomyelitis, by Emma Solomon-Moore, Russell Jago, Lucy Beasant, Amberly Brigden, Esther Crawley in BMJ Paediatrics Open … Continue reading →

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MicroRNAs as biomarkers of pain intensity in patients with CFS

Posted on 07/15/2019 by wames

MicroRNAs as biomarkers of pain intensity in patients with chronic fatigue syndrome, by Hadeel A Al‐Rawaf, Ahmad H Alghadir, Sami A Gabr in Pain Pract. 2019 Jul 8. doi: 10.1111/papr.12817. [Epub ahead of print] Research abstract: BACKGROUND: Numerous experimental models … Continue reading →

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Medically documenting disability in ME/CFS cases [US]

Posted on 07/03/2019 by wames

Medically Documenting Disability in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) cases, by Barbara Comerford and Richard Podell in Front. Pediatr. 7:231, 2 July 2019 [doi: 10.3389/fped.2019.00231]   Article introduction: Patients with severe myalgic encephalomyelitis/Chronic fatigue syndrome (ME/CFS) experience debilitating physical and … Continue reading →

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Illness duration, mood and symptom impact in adolescents with CFS/ME

Posted on 06/19/2019 by wames

Illness duration, mood and symptom impact in adolescents with chronic fatigue syndrome/ myalgic encephalomyelitis?, by Francesca K Neale, Deborah Christie, Dougal S Hargreaves, Terry Y Segal in Archives of Disease in Childhood, Jun 13 2019 Letter excerpt: Chronic fatigue syndrome/myalgic encephalomyelitis … Continue reading →

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Millions of parents missing millions of moments

Posted on 05/07/2019 by wames

Millions of parents Missing millions of moments Missing due to lack of research and care for people with myalgic encephalomyelitis Do not let them miss a moment more #MillionsMissing  

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Social Services can threaten families of children with Chronic Fatigue (ME)

Posted on 05/06/2019 by wames

Online blog Broadly highlights the fact that one in five children with ME are investigated by social services, with some even being forcibly placed in a hospital or foster homes, with destructive effects on their health. Social services can threaten … Continue reading →

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